Il nostro Manifesto

Galleria dei sintomi di Covid Kids lunga Per saperne di più Informazioni su The Long Covid Kids Study Perché i genitori dovrebbero essere coinvolti L'app PeopleWith aiuta i genitori; Tieni traccia dei sintomi del bambino. Fornisce rapporti sulla salute che i genitori possono utilizzare per inviare tramite e-mail le prove dei sintomi e le modifiche al proprio medico. Partecipa alla ricerca che aiuterà a sviluppare la comprensione di Long Covid nei bambini ora e per il futuro. Contatta PeopleWith Contattaci Obiettivi dello studio The Long Covid Kids Per imparare e supportare Unisciti al nostro gruppo di supporto Uno Consenti ai genitori di tenere un registro personale e tenere traccia dei sintomi e del percorso di recupero dei loro figli rimanendo anonimi. Due Raccogli informazioni significative che hanno la capacità di supportare genitori e medici nella loro comprensione di Long Covid in Kids. Tre Usa l'intelligenza collettiva per supportare i genitori e la comunità medica nella loro comprensione di Long Covid in Kids Uno studio investigativo in collaborazione con PeopleWith Tutti i dati sono anonimi Hai sempre il controllo. Sei l'unica persona che può accedere ai dati che possono identificarti e controlli con chi condividi i tuoi dati, come ad esempio il tuo medico. Nessuna informazione personale identificabile viene acquisita. Come vengono utilizzati i dati Un'opzione popolare I tuoi dati anonimi forniranno informazioni che possono essere utilizzate per individuare modelli e tendenze per comprendere appieno il Long Covid nei bambini. Quell'intelligenza può essere studiata e utilizzata per supportare la tua salute e la salute di altri bambini in futuro, formulando consigli utili a persone che sono le tue stesse. Come impariamo Continua a registrare Man mano che sempre più persone accedono ogni giorno, possiamo iniziare a capire cosa funziona. Possiamo quindi presentare raccomandazioni intelligenti per supportare i genitori nella gestione dei sintomi che mirano a migliorare i percorsi di recupero. Come funziona Inserisci i tuoi dati. Scarica semplicemente l' app PeopleWith sul tuo dispositivo da Google Play o App Store . Imposta il profilo di tuo figlio e seleziona Long Covid Kids Health & Wellbeing dall'elenco dei sintomi da includere nel nostro studio. Inizia a registrare i tuoi sintomi e altro ancora.

Galleria dei sintomi di Covid Kids lunga

SUPPORTO Facebook group list Register for support CHI PUÒ UNISCITI AL NOSTRO GRUPPO? Genitori e tutori che; Avere un figlio che ha avuto COVID-19. Vuoi entrare in contatto con altre famiglie che stanno attraversando la stessa cosa. Sono appassionati di sensibilizzazione. Vorrei condividere la loro storia. Stanno trovando difficile trovare aiuto. Vorrebbe sostenere la ricerca sulla Long Covid nei bambini. Facebook Group Peer support for families of children & and young people living with Long Covid and related illnesses. We understand the challenge of diagnosis, do not need to have a diagnosis to join. Learn more LCK Connected Connect with other kids going through Long Covid years, and the parents and caregivers who care for them. Site registration & consent required. Learn more LCK Discord Connect with other teens going through Long Covid. 13+ Learn more Register to Join LCK Discord Unisciti a Long Covid Kids Advocay & Support Join LCK Scotland Facebook Group Join LCK Republic of Ireland Facebook Group Join LCK Wales Facebook Group Long Covid is a global problem. We are pleased to have lead representatives in countries around the world offering support to members. Our main Facebook group is international and welcomes everyone. Join LCK USA Facebook Group Join LCK Canada Facebook Group Join LCK New Zealand Facebook Group Join LCK Austria Facebook Group Join LCK Greece Facebook Group Join LCK Italia Facebook Group Are PIMS-TS and MIS-C the same thing? Yes. In the UK, PIMS-TS stands for Paediatric Inflammatory Multisystem Syndrome, temporally associated with SARS-CoV-2. It is often shortened to PIMS. In the US and internationally it is referred to as Multisystem Inflammatory Syndrome in Children (MIS-C). PIMS-TS is a treatable condition requiring prompt medical treatment. More information from the Evelina Children's Hospital for parents More information from the Evelina Children's Hospital for clinicians More information from the CDC for parents More information from the CDC for clinicians What is PIMS-TS? PIMS-TS is a new systemic inflammatory disease that mainly affects children and young people. The syndrome is caused by a SARS-CoV-2 infection leading to inflammation throughout the body. Inflammation is a normal response from the body’s immune system to fight infection. However, sometimes the immune system can go into overdrive. In PIMS the inflammation is excessive and damaging to the body. For a disease to be classed as rare it affects less than 1 in 2000. Since March 2020 there have been almost 3000 cases of PIMS-TS in the UK alone. PIMS-TS is a treatable condition requiring prompt medical treatment. More information from the Evelina Children's Hospital for parents More information from the Evelina Children's Hospital for clinicians More information from the CDC for parents More information from the CDC for clinicians What are the symptoms of PIMS-TS? All children with PIMS-TS will have a fever >38 degrees C which persists for 24 hours or longer and may not reduce with over-the-counter medications. There is a wide range of other symptoms that children might have, including: Rash Tiredness, sleepiness or fatigue Muscle pain Tummy pain or cramps Red and cracked lips, often swollen Strawberry tongue Swollen fingers, toes or hands and feet, often red Cold hands and feet Peeling skin on hands and feet Headache Red bloodshot eyes Muscle aches and pains Diarrhoea and vomiting Racing heart Dizziness Swollen neck glands Unexplained irritability PIMS-TS is commonly misdiagnosed because: 1. It is a new syndrome 2. It is not commonly seen by doctors 3. Because symptoms are similar to other childhood conditions. 4. Children who experience PIMS-TS may have had an asymptomatic infection 5. Children may not have been previously unwell with COVID-19 6. Children can seem to recover from the acute infection and then develop PIMS-TS 7. The symptoms of PIMS-TS generally don’t appear until 4-6 weeks after SARS-CoV-2 infection. Because PIMS tends to develop after the infectious stage, a PCR test is unlikely to be positive for SARS-CoV-2 at this time. Tell your medical professional if your child has had a positive COVID-19 test or is likely to have been exposed to Covid-19. As with Long Covid, a positive COVID-19 test is not essential for diagnosis. However, knowledge of exposure to Covid-19 supports the diagnosis. We don’t yet know enough about how frequently children who get PIM-TS go on to experience Long Covid. Long Covid Kids have been highlighting in official meetings that non-hospitalised presentations consistent with PIMS have been seen in our support services since 2020. PIMS-TS is a treatable condition requiring prompt medical treatment. More information from the Evelina Children's Hospital for parents More information from the Evelina Children's Hospital for clinicians More information from the CDC for parents More information from the CDC for clinicians What should I do if my child is unwell with the symptoms of PIMS-TS? PIMS-TS is a treatable condition requiring prompt medical treatment. If you think that your child may have PIMS-TS or you are concerned, call your GP or NHS 111 (UK) immediately. If your child develops chest pain, call Emergency Services on 999 (UK) Whilst most children won’t be seriously unwell with SARS-CoV-2 infection, some children may develop PIMS-TS. The most important thing to remember is that any child who is seriously unwell needs to be treated quickly – whatever the illness. There aren't any specific tests for PIMS. Doctors will consider the information available and rule out other more common conditions that cause similar symptoms – including Kawasaki Disease, Sepsis and Toxic Shock Syndrome. Finally, the doctor will be able to work out what treatment is best for your child. If your child is not diagnosed with PIMS and continues to have symptoms consistent with PIMS please get a second opinion. More information from the Evelina Children's Hospital for parents More information from the Evelina Children's Hospital for clinicians More information from the CDC for parents More information from the CDC for clinicians Are Black or Asian children more likely to be affected? Children from all ethnic minority backgrounds are reported to be affected by PIMS. There have been more children affected by PIMS who are from Black and Asian backgrounds, but it is not yet clear why. More information from the Evelina Children's Hospital for parents More information from the Evelina Children's Hospital for clinicians More information from the CDC for parents More information from the CDC for clinicians What if my child has not had COVID-19? Children can experience asymptomatic illness with COVID-19. This means a child may have had COVID-19 without showing any symptoms. Seek medical advice if your child has the symptoms of PIMS even if you don't think they have previously had COVID-19. The doctors will rule out other more common conditions that cause similar symptoms – this includes things like Kawasaki Disease, Sepsis and Toxic Shock Syndrome. More information from the Evelina Children's Hospital for parents More information from the Evelina Children's Hospital for clinicians More information from the CDC for parents More information from the CDC for clinicians How is PIMS diagnosed and treated? Doctors check how well various organs are working and perform blood tests to look at the levels of inflammation in the body. These results together with symptoms guide the doctors to a diagnosis of PIMS. PIMS can be treated with a combination of medicines to reduce inflammation in the body and temporarily “switch off” the hyperactive immune system • Intravenous immunoglobulin (IVIG). • Corticosteroids • Anti-clotting medicines Aspirin and Dalteparin /Clexane) • Biologic medicines (Anakinra and Tocilizumab) We don’t yet know enough about how frequently children who get PIM-TS go on to experience Long Covid. Long Covid Kids have been highlighting in official meetings that non-hospitalised presentations consistent with PIMS have been seen in their support services since 2020. Treatment must be prescribed by a doctor. More information from the Evelina Children's Hospital for parents More information from the Evelina Children's Hospital for clinicians More information from the CDC for parents More information from the CDC for clinicians Are children hospitalised with PIMS? For a disease to be classed as rare it affects less than 1 in 2000. Since March 2020 there have been almost 3000 cases of PIMS-TS in the UK alone. Find more information in the Long Covid Kids Child Specific COVID-19 Infection Analysis Blog Updated March 2021 More information from the Evelina Children's Hospital for parents More information from the Evelina Children's Hospital for clinicians More information from the CDC for parents More information from the CDC for clinicians Do children die from PIMS? Until December 2021 we were unable to find any public data. In December 2021, 1 child PIMS-TS death was reported. Updated Feb 2022 What follow up care should be offered to a child recovering from PIMS? According to the American Academy of Paediatrics (AAPS) children diagnosed with PIMS should receive; Outpatient paediatric cardiology follow-up starting 1 to 2 weeks after discharge from the hospital. Timing should be determined in consultation with a pediatric cardiologist Children with a myocardial injury must have cardiology directed restriction and/or release for activities. Children who receive steroid therapy or treatment with biologics should receive follow-ups with the paediatric rheumatologist after discharge. Primary care follow-up is recommended for all patients. Children and young people usually recover well from PIMS. Some children and young people may develop Long Covid. Should patients with a history of PIMS receive the COVID-19 vaccine? According to the AAP in the USA children with a history of PIMS / MISC should consider delaying vaccination until after they have recovered from illness (including a return to normal cardiac function) and for at least 90 days following their diagnosis of PIMS /MIS-C. Currently, there are limited data about the safety and efficacy of the COVID-19 vaccine in children with a history of PIMS / MISC. It is recommended that paediatricians and families should participate in shared decision making and consider the risks and benefits of COVID-19 vaccination for each patient. The CDC offers additional guidance. Children who have received monoclonal antibodies or convalescent plasma as part of their treatment should wait at least 90 days before receiving the COVID-19 vaccine. What is Long Covid? Long Covid is the term given to the ongoing signs and symptoms caused by SARS-CoV-2 infection. It is generally used to indicate symptoms and clinical signs that remain unresolved for four weeks or longer. Symptoms of Long Covid can also appear some time after an asymptomatic infection. Long Covid was coined by patients who challenged the early COVID-19 guidelines that stated people recovered from mild cases within two weeks. It is called other terms around the world such as Post-COVID-19, Post Covid Condition, and Post-Acute Sequelae of COVID-19 (PASC). Long Covid was first recognised by patients at the beginning of the pandemic when they noticed that symptoms such as those of pneumonia, chilblain like sores and many others were not resolving with time. This history has been peer-reviewed and published Research conducted by both patients and clinical scientists has since proven that the prolonged signs and symptoms of SARS-CoV-2 infection can include damage and dysfunction to all body systems and organs. Symptoms range from chronic loss of smell and fluctuating rashes to neurological and neuropsychiatric symptoms. Some children living with Long Covid have also eventually received a new diagnosis of conditions such as Paediatric Acute-Onset Neuropsychiatric Syndrome (PANs), narcolepsy and organ damage. A booklet published by the National Institute of Health and Care Excellence (NICE), Scottish Intercollegiate Guidelines Network (SIGN) and Royal college of General Practitioners may help explain more. There is no specific test or biomarker for Long Covid and diagnosis is generally by exclusion of other illnesses and syndromes. Some specific tests like a SPECT scan, however, can reveal covid related damage, such as damage to the small vessels in the lung. Many people living with the disease were previously fit and healthy. Scientists are currently working hard to discover biomarkers for Long Covid and there are a number of promising studies nearing completion. NICE produced a rapid guideline on the management of Long Covid in November 2021. They described Long Covid as the presence of signs and symptoms that develop during or following an infection consistent with COVID-19 which continue for 12-weeks or more and are not explained by an alternative diagnosis. This includes both ongoing symptomatic COVID-19 (from 4 to 12 weeks) and long term consequences of COVID-19 (12-weeks or more). Long Covid Kids is referenced as a resource in this document. See Long Covid Physio for more information. How much do we understand about Long Covid? The National Institute for Health Research (NIHR) Second Themed Review on Long Covid stated there may be grounds to understand Long Covid as up to 4 syndromes with different underlying causes and treatment needs. These could include: Long Term Organ Damage Post Viral Syndrome Post Intensive Care Unit (ICU) Syndrome Potentially an entirely novel syndrome separate from the others that could more specifically and uniquely be identified as "Long Covid". It is important to note that these long-term effects on health may coexist in the same person. A note on Post ICU syndrome: Post ICU syndrome is a well known phenomenon in medicine and points to the long-term impact of the intensive care experience on a patient. Doctors and researchers must distinguish the effects of Post ICU syndrome from the damage caused directly by Covid. They both can persist even after hospital discharge. Most children do not need ICU treatment for Covid and related conditions, but this might happen in some cases, for example, with PIMS/ MIS-C. These syndromes are consistent with the experiences shared in Long Covid Kids Support Services. It's going to take years to understand the full impact of SARS-CoV-2 but there are many studies underway seeking to understand and track Long Covid in the UK and globally. Long Covid Kids are proud to be involved in coproducing research and representing lived experiences. Long Covid Kids and others who are speaking up for children are also working hard to ensure transparency of data. As it stands the prevalence of Long Covid is not counted in UK statistics nor do we know the outcome of the child Covid-19 hospital admissions each month. Long term friend to Long Covid Kids, Dr Elaine Maxwell, has recently called for a National Sentinel Audit of Long Covid to obtain standardised data. We do however, have the benefit of our world renowned Office for National Statistics estimates and hope that this vital reporting service will continue. Who can get Long Covid? Anyone, of any age can get Long Covid regardless of the severity of COVID-19 infection. Asymptomatic infection can lead to Long Covid Mild infection can lead to Long Covid Severe infection can lead to Long Covid Long Covid is more often found in non-hospitalised people. Are some people more 'at risk' of getting Long Covid? We don't yet know which children will develop Long Covid. However, early data indicates that those who fall into the following groups appear to have increased risk factors; Female Being young, fit, and healthy Atopy - eczema, asthma, hay fever. Allergy to animals / cats Previous Post Viral Fatigue Ehlers-Danlos syndromes Fibromyalgia Irritable bowel syndrome We need more research to answer this question. Most people recover well from Sars-CoV-2 infection. Anyone who gets COVID-19 may develop symptoms of Long Covid. When do the symptoms of Long Covid start? New and ongoing symptoms lasting more than 4 weeks after COVID-19 infection could be Long Covid. Long Covid most often occurs at around 4-6 weeks after initial COVID-19 infection but can immediately follow the acute phase of COVID-19 infection, or develop at a later date too. It is not uncommon for children to have a gap between COVID-19 infection and Long Covid. Due to the delay in onset of the symptoms of Long Covid we recommend giving children time to convalesce after COVID-19 infection and be cautious about rushing back to activities, including education. It is well documented by people with lived experience, and from other post-viral conditions, that activity can exacerbate symptoms significantly. It is wise to take a cautious approach. For more guidance on recovery please see our support resources developed by people living with Long Covid for families. Cautious Tortoise - #LessHareMoreTortoise Pacing Penguins - #PacingPenguins Tipis for Teachers - #Tips4Teachers How common is Long Covid in children? The NIHR funded paediatric study into Long Covid is called the Clock Study. Their initial findings published in August 2021 showed that 14% of children can go on to develop Long Covid. This means about 2-4 children in each classroom could statistically develop Long Covid. How much impact can Long Covid have on daily life? Long Covid can significantly impact the daily life of children and young people. At the start of 2021 LCK conducted a study of our members which is published as a pre-print. This bar chart shows the effect of infection on children as reported by their families. Some children have one or two symptoms that can impact their daily life occasionally. Some children are living with chronic and disabling symptoms that significantly impact their daily life a lot. Some children have life-altering symptoms that significantly impact their daily life a lot. This bar chart shows some of the specific ways that families reported their children were affected. Physical Activity "Overall, we found that most children had worse activity levels than before infection, since, at the time of the survey, 21.2% were currently unable to enjoy any activity and 30.2% enjoyed the occasional activity but usually had an increase of symptoms after" Mental Health "Parents reported a wide range of neurocognitive symptoms, including lack of concentration, difficulty processing/remembering information or understanding instruction, short term memory issues and struggles to find the right words" Our study is representative of the experiences of children living with Long Covid and evidences the need for further research into the impact of COVID-19 on children. Does my child need to have a confirmed positve COVID-19 or antibody test to receive a diagnosis of Long Covid? No a doctor can make a clinical diagnosis without evidence of a confirmed COVID-19 test. WHO Clinical Case Definition A negative antibody test should not be used to exclude Long Covid as a diagnosis. Research shows that 36% of people living with Long Covid don't seroconvert and women are 4x more likely to seroconvert. This means people living with Long Covid may not develop antibodies. When can my child receive support for their symptoms? In the UK any child that has symptoms of COVID-19 for more than 4 weeks is eligible for a referral to a NHS Long Covid Hub. To obtain an appointment a GP must refer children to the local paediatric team. If the local team is unable to offer support children can be referred to the nearest Long Covid Hub. You do not have to live in the same area as the hub to receive a referral. Find a hub. ​ How long will it take for my child to get better? We don't know how long it will take for each child to get better from Long Covid. Reports of experiences from families vary. Some studies report that children get better between 3 - 6 months. ​ Many children in our support group have been ill since March 2020 and continue to experience relapsing and remitting symptoms that significantly impact dailly life. This means their symptoms can come and go, and can mild or severe. Some children have been ill since March and report to feel '"85% recovered" if they follow their individualised health regimes, including Pacing. See child specific guidance in Pacing Penguins. ​ It is not uncommon to have a period of apparent recovery and then develop symptoms again 6 months later. Some families report new symptoms over a year after infection. It is useful to remember that recovery isn't linear. This means that the path to recovery isn't a straight line. For most people it is very wiggly. Symptoms can increase and decrease in serverity. This means symptoms may come and go and they may sometimes be better, and sometimes be worse. What are the symptoms of acute COVID-19 infection in a child or teenager? Like adults, children can have an asymptomatic (displaying no symptoms), or symptomatic acute COVID-19 infection. A comprehensive list of COVID-19 symptoms can be found on the CDC website. The NHS updated its symptoms list in April 2022 Long Covid Kids have been calling for an improved COVID-19 symptoms list since, winter 2020, from the NHS and Government websites because the ‘classic’ three symptoms of cough, loss/change of smell/taste, and fever do not appear to pick up early infections in children. A survey of members in our support group showed that children often present with: Rashes Fever Sore Throat Headaches Nausea Emotional Dependency Mood changes Diarrhoea Tummy Pain Cold Like Symptoms Since Omicron children coming through our support services can also report: Pain Bloating Joint Pain We are deeply concerned that free testing has been withdrawn. Accessing ongoing support without a positive test can be more challenging and we advise getting a PCR or LFT test if possible. Please seek medical attention whenever your child is unwell. I think my child or teenager has COVID-19, when should I get a test?" Get a test immediately if you can. The following info was added before free. testing was withdrawn in the UK. We stand by this recommendation but recognise that it may not be possible to get a test. Please BOOK a COVID-19 PCR test immediately if you suspect COVID-19 infection. Any sign of being unwell in a child could potentially be a COVID-19 infection. Please see the FAQ above on symptoms for more information on the typical symptoms children may present with. Children often present with different symptoms to adults, listen to your gut instinct and protect your community. You know your child best. A confirmed positive COVID-19 test will make it easier to access medical support for your child should they go on to develop Long Covid and help to accurately record the number of child COVID-19 cases. For moral, emotional, or practical support please join our support services where you will find a wide range of experiences from families around the world. Does it matter if I don’t get my child tested? In short, Yes. Register any positive result Not only does it make the numbers of child COVID-19 cases appear lower if you don’t test, but parents and carers report it is harder to get ongoing medical support, if needed, without a positive test result. Without a test, you may find it difficult to get the correct diagnosis, and you may get misdiagnosed. The government should use the data to inform their decision-making. My child has passed the isolation stage but still has symptoms, do they still need to isolate?" We are not qualified to advise. When Test and Trace contact you they should advise on the dates for isolation (usually a period of 10 days from symptoms or positive test) and on the circumstances under which your child should remain isolated. If they don’t, do feel free to ask, you can phone 119 if you have any queries. However, many children with Long Covid have had ongoing symptoms for many months (some have been struggling since early 2020) and they are not in isolation and not considered to be infectious. If your child has ongoing symptoms past the initial isolation stage do contact your GP for further advice and guidance. Can my child get COVID-19 again? Can you get COVID-19 more than once? My child has COVID-19, can the rest of the household get reinfected?" Yes, there is growing evidence that anyone can get reinfected with COVID-19, even after vaccination. This is particularly the case as the virus develops new variants. There are multiple reports in our support services of reinfection, with some reports of up to 4 confirmed infections. Some children have antibodies after initial infection, others do not. Further research is required to understand more. Recent research shows that antibodies wane at 6-8 months. Where possible isolate any positive cases away from the rest of the household and particularly those who are clinically vulnerable although we recognise that this is not easy with very young children. Other mitigations you may consider are using masks, improving ventilation in the home by opening windows, hand washing, and wiping down frequent contact surfaces such as light switches, door handles, and the bathroom. Make sure to flush the toilet with the seat down. Updated April 2022 We now have reports that some children who did not develop Long Covid after their 1st COVID-19 infection, have developed Long Covid with a 2nd or 3rd infection. Children who have Long Covid, and are reinfected report a mix of experiences, some experience no change in symptoms, others experience significant relapse. PIMS-TS Please see What is PIMS for more detail. Paediatric inflammatory multisystem syndrome temporally associated with SARS-CoV-2 (PIMS-TS) is also known As Multisystem inflammatory syndrome in children (MIS-C). It is often referred to as PIMS-TS or PIMS for short. PIMS is a new condition triggered by a SARS-CoV-2 infection and isn't common. It can be detected early and treated successfully. All children with PIMS will have a fever, which persists over several days. There is a wide range of other symptoms that children might have too. A few of these include tummy pain, diarrhoea, vomiting, rash, cold hands and feet and red eyes. These symptoms can also be found in other illnesses. The most important thing is to remember that any child who is seriously unwell needs to be treated quickly – whatever the illness. If the child has a temperature of 38⁰ or higher, cold hands and feet and is sleepy, call your GP or 111. If symptoms persist and you have not been able to speak to either a GP or 111, take your child to the nearest A&E. If your child doesn’t have these signs of being seriously unwell but you are still concerned, talk to your GP. My child is experiencing sudden onset of mental ill health symptoms such as Obsessive Compulsive Disorder, Anxiety or Tics or Hallucinations. Is this linked to COVID-19? What is PANS/PANDAS?" Some of these symptoms can be a linked to fever or the post viral condition however this could be a neuropsychiatric condition. PANS and PANDAS are closely associated with infections and viruses. Both the initial onset and subsequent exacerbations are usually incited by a variety of childhood infections. From: PANS PANDAS UK PANS (Paediatric Acute-onset Neuropsychiatric Syndrome) PANS is a neuropsychiatric condition which is triggered by a misdirected immune response which results in an inflammation of a child's brain. ​PANS is a clinical diagnosis and there is no specific test which will prove or disprove the condition. In order for a diagnosis to be made, presentation of the following symptoms must occur: PANS Diagnostic Criteria ​An abrupt, acute, dramatic onset (usually within 24-48 hours) of obsessive compulsive disorder (OCD)* or severely restricted food intake** along with two or more of the following symptoms which are not better explained by a known neurologic or medical disorder. ​Anxiety (heightened anxiety, separation anxiety, irrational fears, panic episodes) Tics Emotional lability and/or Depression Irritability, Aggression, and/or Severely Oppositional Behaviours Behavioural (Developmental) Regression (increase in temper tantrums, loss of age-appropriate language, clingy behaviour not related to anxiety). Sudden Deterioration in School Performance (due to difficulties with memory, concentration, hyperactivity, impulsivity, new deficits of visuospatial skills) Motor or Sensory Abnormalities (dysgraphia, clumsiness, tics, new sensory sensitivities to light, noise, smell, taste or texture). Insomnia and/or Sleep disturbances Enuresis and/or Urinary frequency Whilst not part of the diagnostic criteria, in approximately 25% of cases there have been reports of Psychosis and/or Hallucinations PANDAS (Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) ​PANDAS is a subset of PANS. Similarly, it is a neuropsychiatric condition which is triggered by a misdirected immune response to a Streptococcal infection which results in an inflammation of a child's brain. PANDAS Diagnostic Criteria ​Usually starting with an acute onset of obsessive compulsive disorder and/or tics, particularly multiple, complex or unusual tics. PANDAS symptoms can then appear to wax and wane with the child experiencing flares periodically, following illness or periods of stress. The child is usually between the ages of 3 and puberty when first symptoms occur and usually appear following a streptococcal infection such as Sinusitus, Ear infections or Scarlet Fever. In some cases children can carry the streptococcus bacteria without showing signs of illness. Whilst it is not a diagnostic requirement, in addition to OCD* and/or tics, children may also experience co-morbid symptoms similar to those seen in PANS.​ * OCD may include any of the following: Contamination obsessions and compulsions Obsessions that harm will come to others and/or related compulsions Sexual or religious obsessions Repeating compulsions Symmetry and exactness obsessions Ordering/arranging compulsions Counting compulsions Checking obsessions or compulsions Excessive reassurance seeking Need to touch, tap or rub Intrusive images, words, music or nonsense sounds Ritualised eating behaviours​ ** Severely Restricted food intake may be related to contamination fears, obsessional fears of choking, or other obsessional fears including a new obsession with body image or weight. ​ Make an appointment with your GP to discuss your concerns. Your GP may not be aware of PANS/PANDAS so do direct them to https://www.panspandasuk.org/for-medical-professionals and work together to determine what treatment to implement. Where can I find out more about COVID-19 Vaccines for children and young people? Please see The Royal College of Paediatrics and Child Health for information on vaccines. Information about the vaccine, its safety and side effects has been published by the UK Health Security Agency. Vaccination is not thought to eliminate the risk of Long Covid but early evidence does show that it may reduce risk. How can I reduce risk? Avoiding infection is the only known way to avoid Long Covid. LCK recommend following the advice of the World Health Organisation who have a specific page for young people. Layers of mitigation can help reduce risk of infection. Distancing Mask Wearing Hygiene Ventilation & Fresh Air Vaccinations Isolate when ill Videos Understand more about transmission. Find a mask that fits your face. Schools Support your school to encourage any children with any symptoms to stay home. This simple practice can help schools stay open and offer in person learning. Schools can offer hybrid learning options to maintain access to education for children and young people well enough to continue education at home. What support services do LCK offer? Long Covid Kids offer three online services. Site membership, registration and consent are required. We take safeguarding seriously. LCK Connected Guided Zoom Hang Outs are hosted by our team of volunteers for children and teenagers from 6 - 17 years, and the parents and caregivers who care for them. Participants are required to become a member of our website and compete our registration form before using this service. 6 - 12 Years Teens Parents & Caregivers Discord 13+ Facebook Groups Our moderated Facebook groups offer peer to peer support and signposting for families of children & young people living with Long Covid. A Facebook account & membership consent is required. Who are LCK support services for? Long Covid Kids support services are for families, children and young people living with Long Covid from around the world. Parents and Caregivers LCK Connected ChatBox Facebook Children and Young People ages 6 - 17 LCK Connected 6+ Chat Box 8+ Under 8's We are fundraising to be able to extend our services for under 8's. We are inclusive We believe in mutual respect, dignity, fairness, care and equality. We welcome and support all children, young people, their families and caregivers, from every community, without exception.We recognise the challenges families can face in obtaining a diagnosis and welcome members who have had suspected or confirmed COVID-19 infection living with ongoing symptoms. Register to join How do I register for the support services? How to Register Become a member of the WEBSITE using your name and email address. You can do this HERE. Check your inbox / spam folder for an email. Click the button in the email to complete the registration and consent form. Complete the form in full. Receive your 'Confirmation' email and login to access our support services. Login using the LOGIN button at the top of the website. Once you have logged in you can visit the ChatBox Members Page to view the forum and start chatting. Visit. your website profile to add your photo, edit your notification preference and use our support services any time. LCK take the safeguarding of children and young people seriously and require each person using our services to complete the registration process. This helps us to adhere to our Safeguarding Policy. Troubleshooting Please check you are logged into the website. To check that you are logged check you can see your name / profile showing in the top bar of the website. When you are logged in you can edit your notification preferences. There are other FAQs that you can read that might help too. For ongoing troubleshooting issues please contact supportsevices@longcovidkids.org for support. Are LCK support services free? Yes our services are free. We are a charity and rely on donations. Donations are welcome but not expected. Are there any support services for children under 8 years? We welcome children aged 6 - 7 years in LCK Connected if you feel it is the right space for them. LCK hope to be able to provide additional services for younger children soon. During the trial phase of our support services we identified that younger children need an alternative service to those currently on offer, but that some children age 6-7 years may enjoy LCK Connected. We hope to fundraise to be able to run play therapy sessions for younger children in the future. What safeguarding steps are in place? We take safeguarding seriously. LCK adheres to our safeguarding policy and do our best to screen attendees but parents and caregivers are responsible for the safeguarding of their children and young people under 18 and should remain vigilant. LCK requires a parent or carer present with any child under the age of 16 whilst using our support services. An over view of the steps we take Due diligence in the on boarding of volunteers Website members only Registration & consent of members Manual registration verification by team volunteers Age specific channels Terms Of Use Reminder messages about the rules before posting Ongoing part time moderation Ask our members to report concerns Read our Safeguarding Policy Where can I raise issues or concerns? If you have any ongoing concerns that have not been resolved by a moderator please contact the safeguarding officer. In the first instance; Safeguarding Officer Senior Officer Sarah Priest. spriest@longcovidkids.org Unresolved concerns; Safeguarding Lead LCK CEO Sammie Mcfarland smcfarland@longcovidkids.org Where can I find out more? For general enquires about our support services please email supportservices@longcovidkids.org Read our Safeguarding Policy. Read our Terms and Conditions. I have registered on the website but I keep getting “You don’t have permission to access this page” Once you have registered you will be emailed a form to complete giving further details on how to register. This form needs to be completed before access to the LCK Connected booking area and Chatbox is granted. This email sometimes goes into your spam folder, so check there first. If it isn’t there please email supportservices@longcovidkids.org for assistance. I have completed a form and have only been granted access to one area of the support services website. To allow you the opportunity to post in Chatbox in complete confidence your registration only allows you access to one part of the site. For example if on the registration form you specify the user of the website will be parent and caregiver, you will only be granted access to those areas. To get access for your child they will need to register using a DIFFERENT email specifying the age group they would like access to. Email supportservices@longcovidkids.org for further assistance. I have completed the form and I still cannot access the page Try refreshing your browser and trying again. The page sometimes needs a little patience to load, so do give it a chance. I have registered on the website and have been given access to the wrong area, what can I do? If you have been given access to the incorrect area, please email supportservices@longcovidkids.org with the details of the correct are you would like access to and we will amend it for you. What is Long Covid ? Long Covid is the name for the symptoms that carry on for more than four weeks after someone gets COVID-19. It is a descriptive title given by the people who are living with Long Covid to help explain the difference between initial COVID-19 symptoms and ongoing symptoms. How long does it take to get better from Long Covid? We wish we had the answer to this question, but because Long Covid is so new, we just don’t know yet. We can tell you what we know so far. Many children get better in less than three months Some children take longer to get better. Some children have not recovered yet but have improved. There are also some children who have not seen improvement. So as you can see it is a very tricky question to answer. We have learn't a lot since 2020, and there are lots of ways to reduce symptoms to make them more manageable. Some symptoms can be treated. Your doctor will be able to give you and your family some advice about these. Scientists are working hard to understand Long Covid and to develop treatments which we all hope will make people better. Who gets Long Covid? Both children and grown-ups can experience long-lasting symptoms. Because Long Covid is new, we don’t know why some children experience symptoms that seem to go on and on, and why others don’t. This is one of the things doctors and scientists are working on right now. Who can I talk to? Managing any new situation or change in health can cause worry. It’s okay to cry, feel worried or angry but if these emotions become too difficult to deal with, know that there are people who will want to help you manage these feelings. Share how you feel with a trusted adult. There are lots of people who can offer support. Think about who you can talk to at school or at home. You can talk to one of the health care professionals involved in your care. There are many organisations like ChildLine listed at the bottom of his page. It can also help to talk to people who are a similar age to you who have had a similar experience to you. Lots of children have told our team that they enjoy the free online LCK Connected Zoom HangOut sessions we offer, and they like chatting with the friends they make in ChatBox our online forum. You are not alone. There are people who want to help, including us. “What is the bravest thing you’ve ever said” asked the boy, “Help” said the horse.” Charlie Mackesy Kooth Available as an app or on a desktop, Kooth is for CPY age 10-25 and is free, safe, anonymous support accredited by BACP. The Mix 0808 808 4494 (3pm-12am daily) Various avenues of support such as live chat, discussion boards and helpline for CYP age 10-25. Young Minds Textline. Text YM to 85258 (free from EE, O2, Vodafone, 3, Virgin Mobile, BT Mobile, GiffGaff, Tesco Mobile and Telecom Plus). Provides free, 24/7 text support for young people across the UK experiencing a mental health crisis. All texts are answered by trained volunteers, with support from experienced clinical supervisors. Young Minds Website This is a great website that a child or young person can access with excellent resources. Parents can also access it for ways to help support their children. The Emotional Wellbeing and Mental Health Service (EWMHS) Provides advice and support to children, young people and families who are in need of support with their emotional wellbeing or mental health difficulties. Can I talk to other kids with Long Covid? Yes. Lots of children have told our team that they enjoy the free online Zoom HangOut sessions we offer, and they like chatting with the friends they make in ChatBox. ChatBox is an online space for kids living with Long Covid. Kids between the ages of 8-17 years can chat online, be kids, and support each other. There is a different space for each age group to connect with other kids who are in the same age group and who maybe going through a similar experience. It is a great way to make new friends who ‘get it’. If you are under 16 you will need to ask your parent or caregiver to complete the registration form, if you are over 16 you can complete this for yourself. ChatBox Online Forum Online chat forum for kids living with Long Covid. Separate channels for ages; • Age 8-11 years • Age 12-14 years • Age 15+ years • Parents & caregivers ChatBox members can choose to engage in specific topics and discussions that interest them. Connect with other kids who are the same age, or share similar interests and form supportive friendships. ChatBox can be used in between LCK Connected sessions to nurture relationships and gain support. Find out more LCK Connected LCK Connected offers weekly Zoom HangOuts led by our experienced volunteer team and provides a welcoming session for children from ages 6-17 years, parents and caregivers. Members can actively participate and chat with cameras on, others pop in to say ‘Hello’ at the start and then switch their camera off, hang out, chill and listen. Members often choose to continue discussions, friendships and peer-to-peer support via ChatBox Find out more What if nobody believes me ? Long Covid is new, and everybody is learning. Try to talk to your family or trusted adult about how you are feeling. Try to explain how your symptoms affect you. You may find it helpful to show them the information on this website to help them understand more about Long Covid. Consider reaching out to a trusted adult from your extended family (e.g Aunt, Grandparent) or somebody at school. They might be able to help speak to your family for you or with you. Depending on your age you have different rights to seek support without consent and whether or not this support has to be kept private or confidential. You could phone your GP to seek support and they will assess whether you have the capacity to do this. Can I consent to my own treatment? People aged 16 or over are entitled to consent to their own treatment. This can only be overruled in exceptional circumstances. If you are under the age of 16 you can consent to your own treatment if you’re believed to have enough intelligence, and competence to fully understand what’s involved in your treatment. This is known as being Gillick competent. Can I refuse to have treatment? If you refuse treatment, and that refusal could cause you serious harm, your decision can be overruled by the Court of Protection. This is the legal body that oversees the operation of the Mental Capacity Act (2005). If you have refused treatment your parents may consent for you, but it’s usually thought best to go through the courts in this situation. Do I have a right to keep my treatment confidential? Yes. Article 16 of the UN Convention states that children have a right to privacy. This means that you are entitled to respect for privacy and confidentiality, for example, in getting advice and counselling on health matters, depending on your age and understanding. Breaking confidentiality is done only when it is in the best interest of you or the public, required by law or if you give your consent. FAQS Support services

SUPPORTO Join LCK Discord CHI PUÒ UNISCITI AL NOSTRO GRUPPO? Genitori e tutori che; Avere un figlio che ha avuto COVID-19. Vuoi entrare in contatto con altre famiglie che stanno attraversando la stessa cosa. Sono appassionati di sensibilizzazione. Vorrei condividere la loro storia. Stanno trovando difficile trovare aiuto. Vorrebbe sostenere la ricerca sulla Long Covid nei bambini. Are PIMS-TS and MIS-C the same thing? Yes. In the UK, PIMS-TS stands for Paediatric Inflammatory Multisystem Syndrome, temporally associated with SARS-CoV-2. It is often shortened to PIMS. In the US and internationally it is referred to as Multisystem Inflammatory Syndrome in Children (MIS-C). PIMS-TS is a treatable condition requiring prompt medical treatment. More information from the Evelina Children's Hospital for parents More information from the Evelina Children's Hospital for clinicians More information from the CDC for parents More information from the CDC for clinicians What is PIMS-TS? PIMS-TS is a new systemic inflammatory disease that mainly affects children and young people. The syndrome is caused by a SARS-CoV-2 infection leading to inflammation throughout the body. Inflammation is a normal response from the body’s immune system to fight infection. However, sometimes the immune system can go into overdrive. In PIMS the inflammation is excessive and damaging to the body. For a disease to be classed as rare it affects less than 1 in 2000. Since March 2020 there have been almost 3000 cases of PIMS-TS in the UK alone. PIMS-TS is a treatable condition requiring prompt medical treatment. More information from the Evelina Children's Hospital for parents More information from the Evelina Children's Hospital for clinicians More information from the CDC for parents More information from the CDC for clinicians What are the symptoms of PIMS-TS? All children with PIMS-TS will have a fever >38 degrees C which persists for 24 hours or longer and may not reduce with over-the-counter medications. There is a wide range of other symptoms that children might have, including: Rash Tiredness, sleepiness or fatigue Muscle pain Tummy pain or cramps Red and cracked lips, often swollen Strawberry tongue Swollen fingers, toes or hands and feet, often red Cold hands and feet Peeling skin on hands and feet Headache Red bloodshot eyes Muscle aches and pains Diarrhoea and vomiting Racing heart Dizziness Swollen neck glands Unexplained irritability PIMS-TS is commonly misdiagnosed because: 1. It is a new syndrome 2. It is not commonly seen by doctors 3. Because symptoms are similar to other childhood conditions. 4. Children who experience PIMS-TS may have had an asymptomatic infection 5. Children may not have been previously unwell with COVID-19 6. Children can seem to recover from the acute infection and then develop PIMS-TS 7. The symptoms of PIMS-TS generally don’t appear until 4-6 weeks after SARS-CoV-2 infection. Because PIMS tends to develop after the infectious stage, a PCR test is unlikely to be positive for SARS-CoV-2 at this time. Tell your medical professional if your child has had a positive COVID-19 test or is likely to have been exposed to Covid-19. As with Long Covid, a positive COVID-19 test is not essential for diagnosis. However, knowledge of exposure to Covid-19 supports the diagnosis. We don’t yet know enough about how frequently children who get PIM-TS go on to experience Long Covid. Long Covid Kids have been highlighting in official meetings that non-hospitalised presentations consistent with PIMS have been seen in our support services since 2020. PIMS-TS is a treatable condition requiring prompt medical treatment. More information from the Evelina Children's Hospital for parents More information from the Evelina Children's Hospital for clinicians More information from the CDC for parents More information from the CDC for clinicians What should I do if my child is unwell with the symptoms of PIMS-TS? PIMS-TS is a treatable condition requiring prompt medical treatment. If you think that your child may have PIMS-TS or you are concerned, call your GP or NHS 111 (UK) immediately. If your child develops chest pain, call Emergency Services on 999 (UK) Whilst most children won’t be seriously unwell with SARS-CoV-2 infection, some children may develop PIMS-TS. The most important thing to remember is that any child who is seriously unwell needs to be treated quickly – whatever the illness. There aren't any specific tests for PIMS. Doctors will consider the information available and rule out other more common conditions that cause similar symptoms – including Kawasaki Disease, Sepsis and Toxic Shock Syndrome. Finally, the doctor will be able to work out what treatment is best for your child. If your child is not diagnosed with PIMS and continues to have symptoms consistent with PIMS please get a second opinion. More information from the Evelina Children's Hospital for parents More information from the Evelina Children's Hospital for clinicians More information from the CDC for parents More information from the CDC for clinicians Are Black or Asian children more likely to be affected? Children from all ethnic minority backgrounds are reported to be affected by PIMS. There have been more children affected by PIMS who are from Black and Asian backgrounds, but it is not yet clear why. More information from the Evelina Children's Hospital for parents More information from the Evelina Children's Hospital for clinicians More information from the CDC for parents More information from the CDC for clinicians What if my child has not had COVID-19? Children can experience asymptomatic illness with COVID-19. This means a child may have had COVID-19 without showing any symptoms. Seek medical advice if your child has the symptoms of PIMS even if you don't think they have previously had COVID-19. The doctors will rule out other more common conditions that cause similar symptoms – this includes things like Kawasaki Disease, Sepsis and Toxic Shock Syndrome. More information from the Evelina Children's Hospital for parents More information from the Evelina Children's Hospital for clinicians More information from the CDC for parents More information from the CDC for clinicians How is PIMS diagnosed and treated? Doctors check how well various organs are working and perform blood tests to look at the levels of inflammation in the body. These results together with symptoms guide the doctors to a diagnosis of PIMS. PIMS can be treated with a combination of medicines to reduce inflammation in the body and temporarily “switch off” the hyperactive immune system • Intravenous immunoglobulin (IVIG). • Corticosteroids • Anti-clotting medicines Aspirin and Dalteparin /Clexane) • Biologic medicines (Anakinra and Tocilizumab) We don’t yet know enough about how frequently children who get PIM-TS go on to experience Long Covid. Long Covid Kids have been highlighting in official meetings that non-hospitalised presentations consistent with PIMS have been seen in their support services since 2020. Treatment must be prescribed by a doctor. More information from the Evelina Children's Hospital for parents More information from the Evelina Children's Hospital for clinicians More information from the CDC for parents More information from the CDC for clinicians Are children hospitalised with PIMS? For a disease to be classed as rare it affects less than 1 in 2000. Since March 2020 there have been almost 3000 cases of PIMS-TS in the UK alone. Find more information in the Long Covid Kids Child Specific COVID-19 Infection Analysis Blog Updated March 2021 More information from the Evelina Children's Hospital for parents More information from the Evelina Children's Hospital for clinicians More information from the CDC for parents More information from the CDC for clinicians Do children die from PIMS? Until December 2021 we were unable to find any public data. In December 2021, 1 child PIMS-TS death was reported. Updated Feb 2022 What follow up care should be offered to a child recovering from PIMS? According to the American Academy of Paediatrics (AAPS) children diagnosed with PIMS should receive; Outpatient paediatric cardiology follow-up starting 1 to 2 weeks after discharge from the hospital. Timing should be determined in consultation with a pediatric cardiologist Children with a myocardial injury must have cardiology directed restriction and/or release for activities. Children who receive steroid therapy or treatment with biologics should receive follow-ups with the paediatric rheumatologist after discharge. Primary care follow-up is recommended for all patients. Children and young people usually recover well from PIMS. Some children and young people may develop Long Covid. Should patients with a history of PIMS receive the COVID-19 vaccine? According to the AAP in the USA children with a history of PIMS / MISC should consider delaying vaccination until after they have recovered from illness (including a return to normal cardiac function) and for at least 90 days following their diagnosis of PIMS /MIS-C. Currently, there are limited data about the safety and efficacy of the COVID-19 vaccine in children with a history of PIMS / MISC. It is recommended that paediatricians and families should participate in shared decision making and consider the risks and benefits of COVID-19 vaccination for each patient. The CDC offers additional guidance. Children who have received monoclonal antibodies or convalescent plasma as part of their treatment should wait at least 90 days before receiving the COVID-19 vaccine. What is Long Covid? Long Covid is the term given to the ongoing signs and symptoms caused by SARS-CoV-2 infection. It is generally used to indicate symptoms and clinical signs that remain unresolved for four weeks or longer. Symptoms of Long Covid can also appear some time after an asymptomatic infection. Long Covid was coined by patients who challenged the early COVID-19 guidelines that stated people recovered from mild cases within two weeks. It is called other terms around the world such as Post-COVID-19, Post Covid Condition, and Post-Acute Sequelae of COVID-19 (PASC). Long Covid was first recognised by patients at the beginning of the pandemic when they noticed that symptoms such as those of pneumonia, chilblain like sores and many others were not resolving with time. This history has been peer-reviewed and published Research conducted by both patients and clinical scientists has since proven that the prolonged signs and symptoms of SARS-CoV-2 infection can include damage and dysfunction to all body systems and organs. Symptoms range from chronic loss of smell and fluctuating rashes to neurological and neuropsychiatric symptoms. Some children living with Long Covid have also eventually received a new diagnosis of conditions such as Paediatric Acute-Onset Neuropsychiatric Syndrome (PANs), narcolepsy and organ damage. A booklet published by the National Institute of Health and Care Excellence (NICE), Scottish Intercollegiate Guidelines Network (SIGN) and Royal college of General Practitioners may help explain more. There is no specific test or biomarker for Long Covid and diagnosis is generally by exclusion of other illnesses and syndromes. Some specific tests like a SPECT scan, however, can reveal covid related damage, such as damage to the small vessels in the lung. Many people living with the disease were previously fit and healthy. Scientists are currently working hard to discover biomarkers for Long Covid and there are a number of promising studies nearing completion. NICE produced a rapid guideline on the management of Long Covid in November 2021. They described Long Covid as the presence of signs and symptoms that develop during or following an infection consistent with COVID-19 which continue for 12-weeks or more and are not explained by an alternative diagnosis. This includes both ongoing symptomatic COVID-19 (from 4 to 12 weeks) and long term consequences of COVID-19 (12-weeks or more). Long Covid Kids is referenced as a resource in this document. See Long Covid Physio for more information. How much do we understand about Long Covid? The National Institute for Health Research (NIHR) Second Themed Review on Long Covid stated there may be grounds to understand Long Covid as up to 4 syndromes with different underlying causes and treatment needs. These could include: Long Term Organ Damage Post Viral Syndrome Post Intensive Care Unit (ICU) Syndrome Potentially an entirely novel syndrome separate from the others that could more specifically and uniquely be identified as "Long Covid". It is important to note that these long-term effects on health may coexist in the same person. A note on Post ICU syndrome: Post ICU syndrome is a well known phenomenon in medicine and points to the long-term impact of the intensive care experience on a patient. Doctors and researchers must distinguish the effects of Post ICU syndrome from the damage caused directly by Covid. They both can persist even after hospital discharge. Most children do not need ICU treatment for Covid and related conditions, but this might happen in some cases, for example, with PIMS/ MIS-C. These syndromes are consistent with the experiences shared in Long Covid Kids Support Services. It's going to take years to understand the full impact of SARS-CoV-2 but there are many studies underway seeking to understand and track Long Covid in the UK and globally. Long Covid Kids are proud to be involved in coproducing research and representing lived experiences. Long Covid Kids and others who are speaking up for children are also working hard to ensure transparency of data. As it stands the prevalence of Long Covid is not counted in UK statistics nor do we know the outcome of the child Covid-19 hospital admissions each month. Long term friend to Long Covid Kids, Dr Elaine Maxwell, has recently called for a National Sentinel Audit of Long Covid to obtain standardised data. We do however, have the benefit of our world renowned Office for National Statistics estimates and hope that this vital reporting service will continue. Who can get Long Covid? Anyone, of any age can get Long Covid regardless of the severity of COVID-19 infection. Asymptomatic infection can lead to Long Covid Mild infection can lead to Long Covid Severe infection can lead to Long Covid Long Covid is more often found in non-hospitalised people. Are some people more 'at risk' of getting Long Covid? We don't yet know which children will develop Long Covid. However, early data indicates that those who fall into the following groups appear to have increased risk factors; Female Being young, fit, and healthy Atopy - eczema, asthma, hay fever. Allergy to animals / cats Previous Post Viral Fatigue Ehlers-Danlos syndromes Fibromyalgia Irritable bowel syndrome We need more research to answer this question. Most people recover well from Sars-CoV-2 infection. Anyone who gets COVID-19 may develop symptoms of Long Covid. When do the symptoms of Long Covid start? New and ongoing symptoms lasting more than 4 weeks after COVID-19 infection could be Long Covid. Long Covid most often occurs at around 4-6 weeks after initial COVID-19 infection but can immediately follow the acute phase of COVID-19 infection, or develop at a later date too. It is not uncommon for children to have a gap between COVID-19 infection and Long Covid. Due to the delay in onset of the symptoms of Long Covid we recommend giving children time to convalesce after COVID-19 infection and be cautious about rushing back to activities, including education. It is well documented by people with lived experience, and from other post-viral conditions, that activity can exacerbate symptoms significantly. It is wise to take a cautious approach. For more guidance on recovery please see our support resources developed by people living with Long Covid for families. Cautious Tortoise - #LessHareMoreTortoise Pacing Penguins - #PacingPenguins Tipis for Teachers - #Tips4Teachers How common is Long Covid in children? The NIHR funded paediatric study into Long Covid is called the Clock Study. Their initial findings published in August 2021 showed that 14% of children can go on to develop Long Covid. This means about 2-4 children in each classroom could statistically develop Long Covid. How much impact can Long Covid have on daily life? Long Covid can significantly impact the daily life of children and young people. At the start of 2021 LCK conducted a study of our members which is published as a pre-print. This bar chart shows the effect of infection on children as reported by their families. Some children have one or two symptoms that can impact their daily life occasionally. Some children are living with chronic and disabling symptoms that significantly impact their daily life a lot. Some children have life-altering symptoms that significantly impact their daily life a lot. This bar chart shows some of the specific ways that families reported their children were affected. Physical Activity "Overall, we found that most children had worse activity levels than before infection, since, at the time of the survey, 21.2% were currently unable to enjoy any activity and 30.2% enjoyed the occasional activity but usually had an increase of symptoms after" Mental Health "Parents reported a wide range of neurocognitive symptoms, including lack of concentration, difficulty processing/remembering information or understanding instruction, short term memory issues and struggles to find the right words" Our study is representative of the experiences of children living with Long Covid and evidences the need for further research into the impact of COVID-19 on children. Does my child need to have a confirmed positve COVID-19 or antibody test to receive a diagnosis of Long Covid? No a doctor can make a clinical diagnosis without evidence of a confirmed COVID-19 test. WHO Clinical Case Definition A negative antibody test should not be used to exclude Long Covid as a diagnosis. Research shows that 36% of people living with Long Covid don't seroconvert and women are 4x more likely to seroconvert. This means people living with Long Covid may not develop antibodies. When can my child receive support for their symptoms? In the UK any child that has symptoms of COVID-19 for more than 4 weeks is eligible for a referral to a NHS Long Covid Hub. To obtain an appointment a GP must refer children to the local paediatric team. If the local team is unable to offer support children can be referred to the nearest Long Covid Hub. You do not have to live in the same area as the hub to receive a referral. Find a hub. ​ How long will it take for my child to get better? We don't know how long it will take for each child to get better from Long Covid. Reports of experiences from families vary. Some studies report that children get better between 3 - 6 months. ​ Many children in our support group have been ill since March 2020 and continue to experience relapsing and remitting symptoms that significantly impact dailly life. This means their symptoms can come and go, and can mild or severe. Some children have been ill since March and report to feel '"85% recovered" if they follow their individualised health regimes, including Pacing. See child specific guidance in Pacing Penguins. ​ It is not uncommon to have a period of apparent recovery and then develop symptoms again 6 months later. Some families report new symptoms over a year after infection. It is useful to remember that recovery isn't linear. This means that the path to recovery isn't a straight line. For most people it is very wiggly. Symptoms can increase and decrease in serverity. This means symptoms may come and go and they may sometimes be better, and sometimes be worse. What are the symptoms of acute COVID-19 infection in a child or teenager? Like adults, children can have an asymptomatic (displaying no symptoms), or symptomatic acute COVID-19 infection. A comprehensive list of COVID-19 symptoms can be found on the CDC website. The NHS updated its symptoms list in April 2022 Long Covid Kids have been calling for an improved COVID-19 symptoms list since, winter 2020, from the NHS and Government websites because the ‘classic’ three symptoms of cough, loss/change of smell/taste, and fever do not appear to pick up early infections in children. A survey of members in our support group showed that children often present with: Rashes Fever Sore Throat Headaches Nausea Emotional Dependency Mood changes Diarrhoea Tummy Pain Cold Like Symptoms Since Omicron children coming through our support services can also report: Pain Bloating Joint Pain We are deeply concerned that free testing has been withdrawn. Accessing ongoing support without a positive test can be more challenging and we advise getting a PCR or LFT test if possible. Please seek medical attention whenever your child is unwell. I think my child or teenager has COVID-19, when should I get a test?" Get a test immediately if you can. The following info was added before free. testing was withdrawn in the UK. We stand by this recommendation but recognise that it may not be possible to get a test. Please BOOK a COVID-19 PCR test immediately if you suspect COVID-19 infection. Any sign of being unwell in a child could potentially be a COVID-19 infection. Please see the FAQ above on symptoms for more information on the typical symptoms children may present with. Children often present with different symptoms to adults, listen to your gut instinct and protect your community. You know your child best. A confirmed positive COVID-19 test will make it easier to access medical support for your child should they go on to develop Long Covid and help to accurately record the number of child COVID-19 cases. For moral, emotional, or practical support please join our support services where you will find a wide range of experiences from families around the world. Does it matter if I don’t get my child tested? In short, Yes. Register any positive result Not only does it make the numbers of child COVID-19 cases appear lower if you don’t test, but parents and carers report it is harder to get ongoing medical support, if needed, without a positive test result. Without a test, you may find it difficult to get the correct diagnosis, and you may get misdiagnosed. The government should use the data to inform their decision-making. My child has passed the isolation stage but still has symptoms, do they still need to isolate?" We are not qualified to advise. When Test and Trace contact you they should advise on the dates for isolation (usually a period of 10 days from symptoms or positive test) and on the circumstances under which your child should remain isolated. If they don’t, do feel free to ask, you can phone 119 if you have any queries. However, many children with Long Covid have had ongoing symptoms for many months (some have been struggling since early 2020) and they are not in isolation and not considered to be infectious. If your child has ongoing symptoms past the initial isolation stage do contact your GP for further advice and guidance. Can my child get COVID-19 again? Can you get COVID-19 more than once? My child has COVID-19, can the rest of the household get reinfected?" Yes, there is growing evidence that anyone can get reinfected with COVID-19, even after vaccination. This is particularly the case as the virus develops new variants. There are multiple reports in our support services of reinfection, with some reports of up to 4 confirmed infections. Some children have antibodies after initial infection, others do not. Further research is required to understand more. Recent research shows that antibodies wane at 6-8 months. Where possible isolate any positive cases away from the rest of the household and particularly those who are clinically vulnerable although we recognise that this is not easy with very young children. Other mitigations you may consider are using masks, improving ventilation in the home by opening windows, hand washing, and wiping down frequent contact surfaces such as light switches, door handles, and the bathroom. Make sure to flush the toilet with the seat down. Updated April 2022 We now have reports that some children who did not develop Long Covid after their 1st COVID-19 infection, have developed Long Covid with a 2nd or 3rd infection. Children who have Long Covid, and are reinfected report a mix of experiences, some experience no change in symptoms, others experience significant relapse. PIMS-TS Please see What is PIMS for more detail. Paediatric inflammatory multisystem syndrome temporally associated with SARS-CoV-2 (PIMS-TS) is also known As Multisystem inflammatory syndrome in children (MIS-C). It is often referred to as PIMS-TS or PIMS for short. PIMS is a new condition triggered by a SARS-CoV-2 infection and isn't common. It can be detected early and treated successfully. All children with PIMS will have a fever, which persists over several days. There is a wide range of other symptoms that children might have too. A few of these include tummy pain, diarrhoea, vomiting, rash, cold hands and feet and red eyes. These symptoms can also be found in other illnesses. The most important thing is to remember that any child who is seriously unwell needs to be treated quickly – whatever the illness. If the child has a temperature of 38⁰ or higher, cold hands and feet and is sleepy, call your GP or 111. If symptoms persist and you have not been able to speak to either a GP or 111, take your child to the nearest A&E. If your child doesn’t have these signs of being seriously unwell but you are still concerned, talk to your GP. My child is experiencing sudden onset of mental ill health symptoms such as Obsessive Compulsive Disorder, Anxiety or Tics or Hallucinations. Is this linked to COVID-19? What is PANS/PANDAS?" Some of these symptoms can be a linked to fever or the post viral condition however this could be a neuropsychiatric condition. PANS and PANDAS are closely associated with infections and viruses. Both the initial onset and subsequent exacerbations are usually incited by a variety of childhood infections. From: PANS PANDAS UK PANS (Paediatric Acute-onset Neuropsychiatric Syndrome) PANS is a neuropsychiatric condition which is triggered by a misdirected immune response which results in an inflammation of a child's brain. ​PANS is a clinical diagnosis and there is no specific test which will prove or disprove the condition. In order for a diagnosis to be made, presentation of the following symptoms must occur: PANS Diagnostic Criteria ​An abrupt, acute, dramatic onset (usually within 24-48 hours) of obsessive compulsive disorder (OCD)* or severely restricted food intake** along with two or more of the following symptoms which are not better explained by a known neurologic or medical disorder. ​Anxiety (heightened anxiety, separation anxiety, irrational fears, panic episodes) Tics Emotional lability and/or Depression Irritability, Aggression, and/or Severely Oppositional Behaviours Behavioural (Developmental) Regression (increase in temper tantrums, loss of age-appropriate language, clingy behaviour not related to anxiety). Sudden Deterioration in School Performance (due to difficulties with memory, concentration, hyperactivity, impulsivity, new deficits of visuospatial skills) Motor or Sensory Abnormalities (dysgraphia, clumsiness, tics, new sensory sensitivities to light, noise, smell, taste or texture). Insomnia and/or Sleep disturbances Enuresis and/or Urinary frequency Whilst not part of the diagnostic criteria, in approximately 25% of cases there have been reports of Psychosis and/or Hallucinations PANDAS (Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) ​PANDAS is a subset of PANS. Similarly, it is a neuropsychiatric condition which is triggered by a misdirected immune response to a Streptococcal infection which results in an inflammation of a child's brain. PANDAS Diagnostic Criteria ​Usually starting with an acute onset of obsessive compulsive disorder and/or tics, particularly multiple, complex or unusual tics. PANDAS symptoms can then appear to wax and wane with the child experiencing flares periodically, following illness or periods of stress. The child is usually between the ages of 3 and puberty when first symptoms occur and usually appear following a streptococcal infection such as Sinusitus, Ear infections or Scarlet Fever. In some cases children can carry the streptococcus bacteria without showing signs of illness. Whilst it is not a diagnostic requirement, in addition to OCD* and/or tics, children may also experience co-morbid symptoms similar to those seen in PANS.​ * OCD may include any of the following: Contamination obsessions and compulsions Obsessions that harm will come to others and/or related compulsions Sexual or religious obsessions Repeating compulsions Symmetry and exactness obsessions Ordering/arranging compulsions Counting compulsions Checking obsessions or compulsions Excessive reassurance seeking Need to touch, tap or rub Intrusive images, words, music or nonsense sounds Ritualised eating behaviours​ ** Severely Restricted food intake may be related to contamination fears, obsessional fears of choking, or other obsessional fears including a new obsession with body image or weight. ​ Make an appointment with your GP to discuss your concerns. Your GP may not be aware of PANS/PANDAS so do direct them to https://www.panspandasuk.org/for-medical-professionals and work together to determine what treatment to implement. Where can I find out more about COVID-19 Vaccines for children and young people? Please see The Royal College of Paediatrics and Child Health for information on vaccines. Information about the vaccine, its safety and side effects has been published by the UK Health Security Agency. Vaccination is not thought to eliminate the risk of Long Covid but early evidence does show that it may reduce risk. How can I reduce risk? Avoiding infection is the only known way to avoid Long Covid. LCK recommend following the advice of the World Health Organisation who have a specific page for young people. Layers of mitigation can help reduce risk of infection. Distancing Mask Wearing Hygiene Ventilation & Fresh Air Vaccinations Isolate when ill Videos Understand more about transmission. Find a mask that fits your face. Schools Support your school to encourage any children with any symptoms to stay home. This simple practice can help schools stay open and offer in person learning. Schools can offer hybrid learning options to maintain access to education for children and young people well enough to continue education at home. What support services do LCK offer? Long Covid Kids offer three online services. Site membership, registration and consent are required. We take safeguarding seriously. LCK Connected Guided Zoom Hang Outs are hosted by our team of volunteers for children and teenagers from 6 - 17 years, and the parents and caregivers who care for them. Participants are required to become a member of our website and compete our registration form before using this service. 6 - 12 Years Teens Parents & Caregivers Discord 13+ Facebook Groups Our moderated Facebook groups offer peer to peer support and signposting for families of children & young people living with Long Covid. A Facebook account & membership consent is required. Who are LCK support services for? Long Covid Kids support services are for families, children and young people living with Long Covid from around the world. Parents and Caregivers LCK Connected ChatBox Facebook Children and Young People ages 6 - 17 LCK Connected 6+ Chat Box 8+ Under 8's We are fundraising to be able to extend our services for under 8's. We are inclusive We believe in mutual respect, dignity, fairness, care and equality. We welcome and support all children, young people, their families and caregivers, from every community, without exception.We recognise the challenges families can face in obtaining a diagnosis and welcome members who have had suspected or confirmed COVID-19 infection living with ongoing symptoms. Register to join How do I register for the support services? How to Register Become a member of the WEBSITE using your name and email address. You can do this HERE. Check your inbox / spam folder for an email. Click the button in the email to complete the registration and consent form. Complete the form in full. Receive your 'Confirmation' email and login to access our support services. Login using the LOGIN button at the top of the website. Once you have logged in you can visit the ChatBox Members Page to view the forum and start chatting. Visit. your website profile to add your photo, edit your notification preference and use our support services any time. LCK take the safeguarding of children and young people seriously and require each person using our services to complete the registration process. This helps us to adhere to our Safeguarding Policy. Troubleshooting Please check you are logged into the website. To check that you are logged check you can see your name / profile showing in the top bar of the website. When you are logged in you can edit your notification preferences. There are other FAQs that you can read that might help too. For ongoing troubleshooting issues please contact supportsevices@longcovidkids.org for support. Are LCK support services free? Yes our services are free. We are a charity and rely on donations. Donations are welcome but not expected. Are there any support services for children under 8 years? We welcome children aged 6 - 7 years in LCK Connected if you feel it is the right space for them. LCK hope to be able to provide additional services for younger children soon. During the trial phase of our support services we identified that younger children need an alternative service to those currently on offer, but that some children age 6-7 years may enjoy LCK Connected. We hope to fundraise to be able to run play therapy sessions for younger children in the future. What safeguarding steps are in place? We take safeguarding seriously. LCK adheres to our safeguarding policy and do our best to screen attendees but parents and caregivers are responsible for the safeguarding of their children and young people under 18 and should remain vigilant. LCK requires a parent or carer present with any child under the age of 16 whilst using our support services. An over view of the steps we take Due diligence in the on boarding of volunteers Website members only Registration & consent of members Manual registration verification by team volunteers Age specific channels Terms Of Use Reminder messages about the rules before posting Ongoing part time moderation Ask our members to report concerns Read our Safeguarding Policy Where can I raise issues or concerns? If you have any ongoing concerns that have not been resolved by a moderator please contact the safeguarding officer. In the first instance; Safeguarding Officer Senior Officer Sarah Priest. spriest@longcovidkids.org Unresolved concerns; Safeguarding Lead LCK CEO Sammie Mcfarland smcfarland@longcovidkids.org Where can I find out more? For general enquires about our support services please email supportservices@longcovidkids.org Read our Safeguarding Policy. Read our Terms and Conditions. I have registered on the website but I keep getting “You don’t have permission to access this page” Once you have registered you will be emailed a form to complete giving further details on how to register. This form needs to be completed before access to the LCK Connected booking area and Chatbox is granted. This email sometimes goes into your spam folder, so check there first. If it isn’t there please email supportservices@longcovidkids.org for assistance. I have completed a form and have only been granted access to one area of the support services website. To allow you the opportunity to post in Chatbox in complete confidence your registration only allows you access to one part of the site. For example if on the registration form you specify the user of the website will be parent and caregiver, you will only be granted access to those areas. To get access for your child they will need to register using a DIFFERENT email specifying the age group they would like access to. Email supportservices@longcovidkids.org for further assistance. I have completed the form and I still cannot access the page Try refreshing your browser and trying again. The page sometimes needs a little patience to load, so do give it a chance. I have registered on the website and have been given access to the wrong area, what can I do? If you have been given access to the incorrect area, please email supportservices@longcovidkids.org with the details of the correct are you would like access to and we will amend it for you. What is Long Covid ? Long Covid is the name for the symptoms that carry on for more than four weeks after someone gets COVID-19. It is a descriptive title given by the people who are living with Long Covid to help explain the difference between initial COVID-19 symptoms and ongoing symptoms. How long does it take to get better from Long Covid? We wish we had the answer to this question, but because Long Covid is so new, we just don’t know yet. We can tell you what we know so far. Many children get better in less than three months Some children take longer to get better. Some children have not recovered yet but have improved. There are also some children who have not seen improvement. So as you can see it is a very tricky question to answer. We have learn't a lot since 2020, and there are lots of ways to reduce symptoms to make them more manageable. Some symptoms can be treated. Your doctor will be able to give you and your family some advice about these. Scientists are working hard to understand Long Covid and to develop treatments which we all hope will make people better. Who gets Long Covid? Both children and grown-ups can experience long-lasting symptoms. Because Long Covid is new, we don’t know why some children experience symptoms that seem to go on and on, and why others don’t. This is one of the things doctors and scientists are working on right now. Who can I talk to? Managing any new situation or change in health can cause worry. It’s okay to cry, feel worried or angry but if these emotions become too difficult to deal with, know that there are people who will want to help you manage these feelings. Share how you feel with a trusted adult. There are lots of people who can offer support. Think about who you can talk to at school or at home. You can talk to one of the health care professionals involved in your care. There are many organisations like ChildLine listed at the bottom of his page. It can also help to talk to people who are a similar age to you who have had a similar experience to you. Lots of children have told our team that they enjoy the free online LCK Connected Zoom HangOut sessions we offer, and they like chatting with the friends they make in ChatBox our online forum. You are not alone. There are people who want to help, including us. “What is the bravest thing you’ve ever said” asked the boy, “Help” said the horse.” Charlie Mackesy Kooth Available as an app or on a desktop, Kooth is for CPY age 10-25 and is free, safe, anonymous support accredited by BACP. The Mix 0808 808 4494 (3pm-12am daily) Various avenues of support such as live chat, discussion boards and helpline for CYP age 10-25. Young Minds Textline. Text YM to 85258 (free from EE, O2, Vodafone, 3, Virgin Mobile, BT Mobile, GiffGaff, Tesco Mobile and Telecom Plus). Provides free, 24/7 text support for young people across the UK experiencing a mental health crisis. All texts are answered by trained volunteers, with support from experienced clinical supervisors. Young Minds Website This is a great website that a child or young person can access with excellent resources. Parents can also access it for ways to help support their children. The Emotional Wellbeing and Mental Health Service (EWMHS) Provides advice and support to children, young people and families who are in need of support with their emotional wellbeing or mental health difficulties. Can I talk to other kids with Long Covid? Yes. Lots of children have told our team that they enjoy the free online Zoom HangOut sessions we offer, and they like chatting with the friends they make in ChatBox. ChatBox is an online space for kids living with Long Covid. Kids between the ages of 8-17 years can chat online, be kids, and support each other. There is a different space for each age group to connect with other kids who are in the same age group and who maybe going through a similar experience. It is a great way to make new friends who ‘get it’. If you are under 16 you will need to ask your parent or caregiver to complete the registration form, if you are over 16 you can complete this for yourself. ChatBox Online Forum Online chat forum for kids living with Long Covid. Separate channels for ages; • Age 8-11 years • Age 12-14 years • Age 15+ years • Parents & caregivers ChatBox members can choose to engage in specific topics and discussions that interest them. Connect with other kids who are the same age, or share similar interests and form supportive friendships. ChatBox can be used in between LCK Connected sessions to nurture relationships and gain support. Find out more LCK Connected LCK Connected offers weekly Zoom HangOuts led by our experienced volunteer team and provides a welcoming session for children from ages 6-17 years, parents and caregivers. Members can actively participate and chat with cameras on, others pop in to say ‘Hello’ at the start and then switch their camera off, hang out, chill and listen. Members often choose to continue discussions, friendships and peer-to-peer support via ChatBox Find out more What if nobody believes me ? Long Covid is new, and everybody is learning. Try to talk to your family or trusted adult about how you are feeling. Try to explain how your symptoms affect you. You may find it helpful to show them the information on this website to help them understand more about Long Covid. Consider reaching out to a trusted adult from your extended family (e.g Aunt, Grandparent) or somebody at school. They might be able to help speak to your family for you or with you. Depending on your age you have different rights to seek support without consent and whether or not this support has to be kept private or confidential. You could phone your GP to seek support and they will assess whether you have the capacity to do this. Can I consent to my own treatment? People aged 16 or over are entitled to consent to their own treatment. This can only be overruled in exceptional circumstances. If you are under the age of 16 you can consent to your own treatment if you’re believed to have enough intelligence, and competence to fully understand what’s involved in your treatment. This is known as being Gillick competent. Can I refuse to have treatment? If you refuse treatment, and that refusal could cause you serious harm, your decision can be overruled by the Court of Protection. This is the legal body that oversees the operation of the Mental Capacity Act (2005). If you have refused treatment your parents may consent for you, but it’s usually thought best to go through the courts in this situation. Do I have a right to keep my treatment confidential? Yes. Article 16 of the UN Convention states that children have a right to privacy. This means that you are entitled to respect for privacy and confidentiality, for example, in getting advice and counselling on health matters, depending on your age and understanding. Breaking confidentiality is done only when it is in the best interest of you or the public, required by law or if you give your consent. FAQS - chatbox Testimonials "LCK connected is a online chat forum for parents, caregivers, children and young people living with Long Covid. "

Domande frequenti Abbiamo incluso alcune domande frequenti che abbiamo ricevuto via e-mail da genitori, scuole e tutori Non pretendiamo di avere tutte le risposte, ma speriamo che questo aiuti. Are PIMS-TS and MIS-C the same thing? Yes. In the UK, PIMS-TS stands for Paediatric Inflammatory Multisystem Syndrome, temporally associated with SARS-CoV-2. It is often shortened to PIMS. In the US and internationally it is referred to as Multisystem Inflammatory Syndrome in Children (MIS-C). PIMS-TS is a treatable condition requiring prompt medical treatment. More information from the Evelina Children's Hospital for parents More information from the Evelina Children's Hospital for clinicians More information from the CDC for parents More information from the CDC for clinicians What is PIMS-TS? PIMS-TS is a new systemic inflammatory disease that mainly affects children and young people. The syndrome is caused by a SARS-CoV-2 infection leading to inflammation throughout the body. Inflammation is a normal response from the body’s immune system to fight infection. However, sometimes the immune system can go into overdrive. In PIMS the inflammation is excessive and damaging to the body. For a disease to be classed as rare it affects less than 1 in 2000. Since March 2020 there have been almost 3000 cases of PIMS-TS in the UK alone. PIMS-TS is a treatable condition requiring prompt medical treatment. More information from the Evelina Children's Hospital for parents More information from the Evelina Children's Hospital for clinicians More information from the CDC for parents More information from the CDC for clinicians What are the symptoms of PIMS-TS? All children with PIMS-TS will have a fever >38 degrees C which persists for 24 hours or longer and may not reduce with over-the-counter medications. There is a wide range of other symptoms that children might have, including: Rash Tiredness, sleepiness or fatigue Muscle pain Tummy pain or cramps Red and cracked lips, often swollen Strawberry tongue Swollen fingers, toes or hands and feet, often red Cold hands and feet Peeling skin on hands and feet Headache Red bloodshot eyes Muscle aches and pains Diarrhoea and vomiting Racing heart Dizziness Swollen neck glands Unexplained irritability PIMS-TS is commonly misdiagnosed because: 1. It is a new syndrome 2. It is not commonly seen by doctors 3. Because symptoms are similar to other childhood conditions. 4. Children who experience PIMS-TS may have had an asymptomatic infection 5. Children may not have been previously unwell with COVID-19 6. Children can seem to recover from the acute infection and then develop PIMS-TS 7. The symptoms of PIMS-TS generally don’t appear until 4-6 weeks after SARS-CoV-2 infection. Because PIMS tends to develop after the infectious stage, a PCR test is unlikely to be positive for SARS-CoV-2 at this time. Tell your medical professional if your child has had a positive COVID-19 test or is likely to have been exposed to Covid-19. As with Long Covid, a positive COVID-19 test is not essential for diagnosis. However, knowledge of exposure to Covid-19 supports the diagnosis. We don’t yet know enough about how frequently children who get PIM-TS go on to experience Long Covid. Long Covid Kids have been highlighting in official meetings that non-hospitalised presentations consistent with PIMS have been seen in our support services since 2020. PIMS-TS is a treatable condition requiring prompt medical treatment. More information from the Evelina Children's Hospital for parents More information from the Evelina Children's Hospital for clinicians More information from the CDC for parents More information from the CDC for clinicians What should I do if my child is unwell with the symptoms of PIMS-TS? PIMS-TS is a treatable condition requiring prompt medical treatment. If you think that your child may have PIMS-TS or you are concerned, call your GP or NHS 111 (UK) immediately. If your child develops chest pain, call Emergency Services on 999 (UK) Whilst most children won’t be seriously unwell with SARS-CoV-2 infection, some children may develop PIMS-TS. The most important thing to remember is that any child who is seriously unwell needs to be treated quickly – whatever the illness. There aren't any specific tests for PIMS. Doctors will consider the information available and rule out other more common conditions that cause similar symptoms – including Kawasaki Disease, Sepsis and Toxic Shock Syndrome. Finally, the doctor will be able to work out what treatment is best for your child. If your child is not diagnosed with PIMS and continues to have symptoms consistent with PIMS please get a second opinion. More information from the Evelina Children's Hospital for parents More information from the Evelina Children's Hospital for clinicians More information from the CDC for parents More information from the CDC for clinicians Are Black or Asian children more likely to be affected? Children from all ethnic minority backgrounds are reported to be affected by PIMS. There have been more children affected by PIMS who are from Black and Asian backgrounds, but it is not yet clear why. More information from the Evelina Children's Hospital for parents More information from the Evelina Children's Hospital for clinicians More information from the CDC for parents More information from the CDC for clinicians What if my child has not had COVID-19? Children can experience asymptomatic illness with COVID-19. This means a child may have had COVID-19 without showing any symptoms. Seek medical advice if your child has the symptoms of PIMS even if you don't think they have previously had COVID-19. The doctors will rule out other more common conditions that cause similar symptoms – this includes things like Kawasaki Disease, Sepsis and Toxic Shock Syndrome. More information from the Evelina Children's Hospital for parents More information from the Evelina Children's Hospital for clinicians More information from the CDC for parents More information from the CDC for clinicians How is PIMS diagnosed and treated? Doctors check how well various organs are working and perform blood tests to look at the levels of inflammation in the body. These results together with symptoms guide the doctors to a diagnosis of PIMS. PIMS can be treated with a combination of medicines to reduce inflammation in the body and temporarily “switch off” the hyperactive immune system • Intravenous immunoglobulin (IVIG). • Corticosteroids • Anti-clotting medicines Aspirin and Dalteparin /Clexane) • Biologic medicines (Anakinra and Tocilizumab) We don’t yet know enough about how frequently children who get PIM-TS go on to experience Long Covid. Long Covid Kids have been highlighting in official meetings that non-hospitalised presentations consistent with PIMS have been seen in their support services since 2020. Treatment must be prescribed by a doctor. More information from the Evelina Children's Hospital for parents More information from the Evelina Children's Hospital for clinicians More information from the CDC for parents More information from the CDC for clinicians Are children hospitalised with PIMS? For a disease to be classed as rare it affects less than 1 in 2000. Since March 2020 there have been almost 3000 cases of PIMS-TS in the UK alone. Find more information in the Long Covid Kids Child Specific COVID-19 Infection Analysis Blog Updated March 2021 More information from the Evelina Children's Hospital for parents More information from the Evelina Children's Hospital for clinicians More information from the CDC for parents More information from the CDC for clinicians Do children die from PIMS? Until December 2021 we were unable to find any public data. In December 2021, 1 child PIMS-TS death was reported. Updated Feb 2022 What follow up care should be offered to a child recovering from PIMS? According to the American Academy of Paediatrics (AAPS) children diagnosed with PIMS should receive; Outpatient paediatric cardiology follow-up starting 1 to 2 weeks after discharge from the hospital. Timing should be determined in consultation with a pediatric cardiologist Children with a myocardial injury must have cardiology directed restriction and/or release for activities. Children who receive steroid therapy or treatment with biologics should receive follow-ups with the paediatric rheumatologist after discharge. Primary care follow-up is recommended for all patients. Children and young people usually recover well from PIMS. Some children and young people may develop Long Covid. Should patients with a history of PIMS receive the COVID-19 vaccine? According to the AAP in the USA children with a history of PIMS / MISC should consider delaying vaccination until after they have recovered from illness (including a return to normal cardiac function) and for at least 90 days following their diagnosis of PIMS /MIS-C. Currently, there are limited data about the safety and efficacy of the COVID-19 vaccine in children with a history of PIMS / MISC. It is recommended that paediatricians and families should participate in shared decision making and consider the risks and benefits of COVID-19 vaccination for each patient. The CDC offers additional guidance. Children who have received monoclonal antibodies or convalescent plasma as part of their treatment should wait at least 90 days before receiving the COVID-19 vaccine. What is Long Covid? Long Covid is the term given to the ongoing signs and symptoms caused by SARS-CoV-2 infection. It is generally used to indicate symptoms and clinical signs that remain unresolved for four weeks or longer. Symptoms of Long Covid can also appear some time after an asymptomatic infection. Long Covid was coined by patients who challenged the early COVID-19 guidelines that stated people recovered from mild cases within two weeks. It is called other terms around the world such as Post-COVID-19, Post Covid Condition, and Post-Acute Sequelae of COVID-19 (PASC). Long Covid was first recognised by patients at the beginning of the pandemic when they noticed that symptoms such as those of pneumonia, chilblain like sores and many others were not resolving with time. This history has been peer-reviewed and published Research conducted by both patients and clinical scientists has since proven that the prolonged signs and symptoms of SARS-CoV-2 infection can include damage and dysfunction to all body systems and organs. Symptoms range from chronic loss of smell and fluctuating rashes to neurological and neuropsychiatric symptoms. Some children living with Long Covid have also eventually received a new diagnosis of conditions such as Paediatric Acute-Onset Neuropsychiatric Syndrome (PANs), narcolepsy and organ damage. A booklet published by the National Institute of Health and Care Excellence (NICE), Scottish Intercollegiate Guidelines Network (SIGN) and Royal college of General Practitioners may help explain more. There is no specific test or biomarker for Long Covid and diagnosis is generally by exclusion of other illnesses and syndromes. Some specific tests like a SPECT scan, however, can reveal covid related damage, such as damage to the small vessels in the lung. Many people living with the disease were previously fit and healthy. Scientists are currently working hard to discover biomarkers for Long Covid and there are a number of promising studies nearing completion. NICE produced a rapid guideline on the management of Long Covid in November 2021. They described Long Covid as the presence of signs and symptoms that develop during or following an infection consistent with COVID-19 which continue for 12-weeks or more and are not explained by an alternative diagnosis. This includes both ongoing symptomatic COVID-19 (from 4 to 12 weeks) and long term consequences of COVID-19 (12-weeks or more). Long Covid Kids is referenced as a resource in this document. See Long Covid Physio for more information. How much do we understand about Long Covid? The National Institute for Health Research (NIHR) Second Themed Review on Long Covid stated there may be grounds to understand Long Covid as up to 4 syndromes with different underlying causes and treatment needs. These could include: Long Term Organ Damage Post Viral Syndrome Post Intensive Care Unit (ICU) Syndrome Potentially an entirely novel syndrome separate from the others that could more specifically and uniquely be identified as "Long Covid". It is important to note that these long-term effects on health may coexist in the same person. A note on Post ICU syndrome: Post ICU syndrome is a well known phenomenon in medicine and points to the long-term impact of the intensive care experience on a patient. Doctors and researchers must distinguish the effects of Post ICU syndrome from the damage caused directly by Covid. They both can persist even after hospital discharge. Most children do not need ICU treatment for Covid and related conditions, but this might happen in some cases, for example, with PIMS/ MIS-C. These syndromes are consistent with the experiences shared in Long Covid Kids Support Services. It's going to take years to understand the full impact of SARS-CoV-2 but there are many studies underway seeking to understand and track Long Covid in the UK and globally. Long Covid Kids are proud to be involved in coproducing research and representing lived experiences. Long Covid Kids and others who are speaking up for children are also working hard to ensure transparency of data. As it stands the prevalence of Long Covid is not counted in UK statistics nor do we know the outcome of the child Covid-19 hospital admissions each month. Long term friend to Long Covid Kids, Dr Elaine Maxwell, has recently called for a National Sentinel Audit of Long Covid to obtain standardised data. We do however, have the benefit of our world renowned Office for National Statistics estimates and hope that this vital reporting service will continue. Who can get Long Covid? Anyone, of any age can get Long Covid regardless of the severity of COVID-19 infection. Asymptomatic infection can lead to Long Covid Mild infection can lead to Long Covid Severe infection can lead to Long Covid Long Covid is more often found in non-hospitalised people. Are some people more 'at risk' of getting Long Covid? We don't yet know which children will develop Long Covid. However, early data indicates that those who fall into the following groups appear to have increased risk factors; Female Being young, fit, and healthy Atopy - eczema, asthma, hay fever. Allergy to animals / cats Previous Post Viral Fatigue Ehlers-Danlos syndromes Fibromyalgia Irritable bowel syndrome We need more research to answer this question. Most people recover well from Sars-CoV-2 infection. Anyone who gets COVID-19 may develop symptoms of Long Covid. When do the symptoms of Long Covid start? New and ongoing symptoms lasting more than 4 weeks after COVID-19 infection could be Long Covid. Long Covid most often occurs at around 4-6 weeks after initial COVID-19 infection but can immediately follow the acute phase of COVID-19 infection, or develop at a later date too. It is not uncommon for children to have a gap between COVID-19 infection and Long Covid. Due to the delay in onset of the symptoms of Long Covid we recommend giving children time to convalesce after COVID-19 infection and be cautious about rushing back to activities, including education. It is well documented by people with lived experience, and from other post-viral conditions, that activity can exacerbate symptoms significantly. It is wise to take a cautious approach. For more guidance on recovery please see our support resources developed by people living with Long Covid for families. Cautious Tortoise - #LessHareMoreTortoise Pacing Penguins - #PacingPenguins Tipis for Teachers - #Tips4Teachers How common is Long Covid in children? The NIHR funded paediatric study into Long Covid is called the Clock Study. Their initial findings published in August 2021 showed that 14% of children can go on to develop Long Covid. This means about 2-4 children in each classroom could statistically develop Long Covid. How much impact can Long Covid have on daily life? Long Covid can significantly impact the daily life of children and young people. At the start of 2021 LCK conducted a study of our members which is published as a pre-print. This bar chart shows the effect of infection on children as reported by their families. Some children have one or two symptoms that can impact their daily life occasionally. Some children are living with chronic and disabling symptoms that significantly impact their daily life a lot. Some children have life-altering symptoms that significantly impact their daily life a lot. This bar chart shows some of the specific ways that families reported their children were affected. Physical Activity "Overall, we found that most children had worse activity levels than before infection, since, at the time of the survey, 21.2% were currently unable to enjoy any activity and 30.2% enjoyed the occasional activity but usually had an increase of symptoms after" Mental Health "Parents reported a wide range of neurocognitive symptoms, including lack of concentration, difficulty processing/remembering information or understanding instruction, short term memory issues and struggles to find the right words" Our study is representative of the experiences of children living with Long Covid and evidences the need for further research into the impact of COVID-19 on children. Does my child need to have a confirmed positve COVID-19 or antibody test to receive a diagnosis of Long Covid? No a doctor can make a clinical diagnosis without evidence of a confirmed COVID-19 test. WHO Clinical Case Definition A negative antibody test should not be used to exclude Long Covid as a diagnosis. Research shows that 36% of people living with Long Covid don't seroconvert and women are 4x more likely to seroconvert. This means people living with Long Covid may not develop antibodies. When can my child receive support for their symptoms? In the UK any child that has symptoms of COVID-19 for more than 4 weeks is eligible for a referral to a NHS Long Covid Hub. To obtain an appointment a GP must refer children to the local paediatric team. If the local team is unable to offer support children can be referred to the nearest Long Covid Hub. You do not have to live in the same area as the hub to receive a referral. Find a hub. ​ How long will it take for my child to get better? We don't know how long it will take for each child to get better from Long Covid. Reports of experiences from families vary. Some studies report that children get better between 3 - 6 months. ​ Many children in our support group have been ill since March 2020 and continue to experience relapsing and remitting symptoms that significantly impact dailly life. This means their symptoms can come and go, and can mild or severe. Some children have been ill since March and report to feel '"85% recovered" if they follow their individualised health regimes, including Pacing. See child specific guidance in Pacing Penguins. ​ It is not uncommon to have a period of apparent recovery and then develop symptoms again 6 months later. Some families report new symptoms over a year after infection. It is useful to remember that recovery isn't linear. This means that the path to recovery isn't a straight line. For most people it is very wiggly. Symptoms can increase and decrease in serverity. This means symptoms may come and go and they may sometimes be better, and sometimes be worse. What are the symptoms of acute COVID-19 infection in a child or teenager? Like adults, children can have an asymptomatic (displaying no symptoms), or symptomatic acute COVID-19 infection. A comprehensive list of COVID-19 symptoms can be found on the CDC website. The NHS updated its symptoms list in April 2022 Long Covid Kids have been calling for an improved COVID-19 symptoms list since, winter 2020, from the NHS and Government websites because the ‘classic’ three symptoms of cough, loss/change of smell/taste, and fever do not appear to pick up early infections in children. A survey of members in our support group showed that children often present with: Rashes Fever Sore Throat Headaches Nausea Emotional Dependency Mood changes Diarrhoea Tummy Pain Cold Like Symptoms Since Omicron children coming through our support services can also report: Pain Bloating Joint Pain We are deeply concerned that free testing has been withdrawn. Accessing ongoing support without a positive test can be more challenging and we advise getting a PCR or LFT test if possible. Please seek medical attention whenever your child is unwell. I think my child or teenager has COVID-19, when should I get a test?" Get a test immediately if you can. The following info was added before free. testing was withdrawn in the UK. We stand by this recommendation but recognise that it may not be possible to get a test. Please BOOK a COVID-19 PCR test immediately if you suspect COVID-19 infection. Any sign of being unwell in a child could potentially be a COVID-19 infection. Please see the FAQ above on symptoms for more information on the typical symptoms children may present with. Children often present with different symptoms to adults, listen to your gut instinct and protect your community. You know your child best. A confirmed positive COVID-19 test will make it easier to access medical support for your child should they go on to develop Long Covid and help to accurately record the number of child COVID-19 cases. For moral, emotional, or practical support please join our support services where you will find a wide range of experiences from families around the world. Does it matter if I don’t get my child tested? In short, Yes. Register any positive result Not only does it make the numbers of child COVID-19 cases appear lower if you don’t test, but parents and carers report it is harder to get ongoing medical support, if needed, without a positive test result. Without a test, you may find it difficult to get the correct diagnosis, and you may get misdiagnosed. The government should use the data to inform their decision-making. My child has passed the isolation stage but still has symptoms, do they still need to isolate?" We are not qualified to advise. When Test and Trace contact you they should advise on the dates for isolation (usually a period of 10 days from symptoms or positive test) and on the circumstances under which your child should remain isolated. If they don’t, do feel free to ask, you can phone 119 if you have any queries. However, many children with Long Covid have had ongoing symptoms for many months (some have been struggling since early 2020) and they are not in isolation and not considered to be infectious. If your child has ongoing symptoms past the initial isolation stage do contact your GP for further advice and guidance. Can my child get COVID-19 again? Can you get COVID-19 more than once? My child has COVID-19, can the rest of the household get reinfected?" Yes, there is growing evidence that anyone can get reinfected with COVID-19, even after vaccination. This is particularly the case as the virus develops new variants. There are multiple reports in our support services of reinfection, with some reports of up to 4 confirmed infections. Some children have antibodies after initial infection, others do not. Further research is required to understand more. Recent research shows that antibodies wane at 6-8 months. Where possible isolate any positive cases away from the rest of the household and particularly those who are clinically vulnerable although we recognise that this is not easy with very young children. Other mitigations you may consider are using masks, improving ventilation in the home by opening windows, hand washing, and wiping down frequent contact surfaces such as light switches, door handles, and the bathroom. Make sure to flush the toilet with the seat down. Updated April 2022 We now have reports that some children who did not develop Long Covid after their 1st COVID-19 infection, have developed Long Covid with a 2nd or 3rd infection. Children who have Long Covid, and are reinfected report a mix of experiences, some experience no change in symptoms, others experience significant relapse. PIMS-TS Please see What is PIMS for more detail. Paediatric inflammatory multisystem syndrome temporally associated with SARS-CoV-2 (PIMS-TS) is also known As Multisystem inflammatory syndrome in children (MIS-C). It is often referred to as PIMS-TS or PIMS for short. PIMS is a new condition triggered by a SARS-CoV-2 infection and isn't common. It can be detected early and treated successfully. All children with PIMS will have a fever, which persists over several days. There is a wide range of other symptoms that children might have too. A few of these include tummy pain, diarrhoea, vomiting, rash, cold hands and feet and red eyes. These symptoms can also be found in other illnesses. The most important thing is to remember that any child who is seriously unwell needs to be treated quickly – whatever the illness. If the child has a temperature of 38⁰ or higher, cold hands and feet and is sleepy, call your GP or 111. If symptoms persist and you have not been able to speak to either a GP or 111, take your child to the nearest A&E. If your child doesn’t have these signs of being seriously unwell but you are still concerned, talk to your GP. My child is experiencing sudden onset of mental ill health symptoms such as Obsessive Compulsive Disorder, Anxiety or Tics or Hallucinations. Is this linked to COVID-19? What is PANS/PANDAS?" Some of these symptoms can be a linked to fever or the post viral condition however this could be a neuropsychiatric condition. PANS and PANDAS are closely associated with infections and viruses. Both the initial onset and subsequent exacerbations are usually incited by a variety of childhood infections. From: PANS PANDAS UK PANS (Paediatric Acute-onset Neuropsychiatric Syndrome) PANS is a neuropsychiatric condition which is triggered by a misdirected immune response which results in an inflammation of a child's brain. ​PANS is a clinical diagnosis and there is no specific test which will prove or disprove the condition. In order for a diagnosis to be made, presentation of the following symptoms must occur: PANS Diagnostic Criteria ​An abrupt, acute, dramatic onset (usually within 24-48 hours) of obsessive compulsive disorder (OCD)* or severely restricted food intake** along with two or more of the following symptoms which are not better explained by a known neurologic or medical disorder. ​Anxiety (heightened anxiety, separation anxiety, irrational fears, panic episodes) Tics Emotional lability and/or Depression Irritability, Aggression, and/or Severely Oppositional Behaviours Behavioural (Developmental) Regression (increase in temper tantrums, loss of age-appropriate language, clingy behaviour not related to anxiety). Sudden Deterioration in School Performance (due to difficulties with memory, concentration, hyperactivity, impulsivity, new deficits of visuospatial skills) Motor or Sensory Abnormalities (dysgraphia, clumsiness, tics, new sensory sensitivities to light, noise, smell, taste or texture). Insomnia and/or Sleep disturbances Enuresis and/or Urinary frequency Whilst not part of the diagnostic criteria, in approximately 25% of cases there have been reports of Psychosis and/or Hallucinations PANDAS (Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) ​PANDAS is a subset of PANS. Similarly, it is a neuropsychiatric condition which is triggered by a misdirected immune response to a Streptococcal infection which results in an inflammation of a child's brain. PANDAS Diagnostic Criteria ​Usually starting with an acute onset of obsessive compulsive disorder and/or tics, particularly multiple, complex or unusual tics. PANDAS symptoms can then appear to wax and wane with the child experiencing flares periodically, following illness or periods of stress. The child is usually between the ages of 3 and puberty when first symptoms occur and usually appear following a streptococcal infection such as Sinusitus, Ear infections or Scarlet Fever. In some cases children can carry the streptococcus bacteria without showing signs of illness. Whilst it is not a diagnostic requirement, in addition to OCD* and/or tics, children may also experience co-morbid symptoms similar to those seen in PANS.​ * OCD may include any of the following: Contamination obsessions and compulsions Obsessions that harm will come to others and/or related compulsions Sexual or religious obsessions Repeating compulsions Symmetry and exactness obsessions Ordering/arranging compulsions Counting compulsions Checking obsessions or compulsions Excessive reassurance seeking Need to touch, tap or rub Intrusive images, words, music or nonsense sounds Ritualised eating behaviours​ ** Severely Restricted food intake may be related to contamination fears, obsessional fears of choking, or other obsessional fears including a new obsession with body image or weight. ​ Make an appointment with your GP to discuss your concerns. Your GP may not be aware of PANS/PANDAS so do direct them to https://www.panspandasuk.org/for-medical-professionals and work together to determine what treatment to implement. Where can I find out more about COVID-19 Vaccines for children and young people? Please see The Royal College of Paediatrics and Child Health for information on vaccines. Information about the vaccine, its safety and side effects has been published by the UK Health Security Agency. Vaccination is not thought to eliminate the risk of Long Covid but early evidence does show that it may reduce risk. How can I reduce risk? Avoiding infection is the only known way to avoid Long Covid. LCK recommend following the advice of the World Health Organisation who have a specific page for young people. Layers of mitigation can help reduce risk of infection. Distancing Mask Wearing Hygiene Ventilation & Fresh Air Vaccinations Isolate when ill Videos Understand more about transmission. Find a mask that fits your face. Schools Support your school to encourage any children with any symptoms to stay home. This simple practice can help schools stay open and offer in person learning. Schools can offer hybrid learning options to maintain access to education for children and young people well enough to continue education at home. What support services do LCK offer? Long Covid Kids offer three online services. Site membership, registration and consent are required. We take safeguarding seriously. LCK Connected Guided Zoom Hang Outs are hosted by our team of volunteers for children and teenagers from 6 - 17 years, and the parents and caregivers who care for them. Participants are required to become a member of our website and compete our registration form before using this service. 6 - 12 Years Teens Parents & Caregivers Discord 13+ Facebook Groups Our moderated Facebook groups offer peer to peer support and signposting for families of children & young people living with Long Covid. A Facebook account & membership consent is required. Who are LCK support services for? Long Covid Kids support services are for families, children and young people living with Long Covid from around the world. Parents and Caregivers LCK Connected ChatBox Facebook Children and Young People ages 6 - 17 LCK Connected 6+ Chat Box 8+ Under 8's We are fundraising to be able to extend our services for under 8's. We are inclusive We believe in mutual respect, dignity, fairness, care and equality. We welcome and support all children, young people, their families and caregivers, from every community, without exception.We recognise the challenges families can face in obtaining a diagnosis and welcome members who have had suspected or confirmed COVID-19 infection living with ongoing symptoms. Register to join How do I register for the support services? How to Register Become a member of the WEBSITE using your name and email address. You can do this HERE. Check your inbox / spam folder for an email. Click the button in the email to complete the registration and consent form. Complete the form in full. Receive your 'Confirmation' email and login to access our support services. Login using the LOGIN button at the top of the website. Once you have logged in you can visit the ChatBox Members Page to view the forum and start chatting. Visit. your website profile to add your photo, edit your notification preference and use our support services any time. LCK take the safeguarding of children and young people seriously and require each person using our services to complete the registration process. This helps us to adhere to our Safeguarding Policy. Troubleshooting Please check you are logged into the website. To check that you are logged check you can see your name / profile showing in the top bar of the website. When you are logged in you can edit your notification preferences. There are other FAQs that you can read that might help too. For ongoing troubleshooting issues please contact supportsevices@longcovidkids.org for support. Are LCK support services free? Yes our services are free. We are a charity and rely on donations. Donations are welcome but not expected. Are there any support services for children under 8 years? We welcome children aged 6 - 7 years in LCK Connected if you feel it is the right space for them. LCK hope to be able to provide additional services for younger children soon. During the trial phase of our support services we identified that younger children need an alternative service to those currently on offer, but that some children age 6-7 years may enjoy LCK Connected. We hope to fundraise to be able to run play therapy sessions for younger children in the future. What safeguarding steps are in place? We take safeguarding seriously. LCK adheres to our safeguarding policy and do our best to screen attendees but parents and caregivers are responsible for the safeguarding of their children and young people under 18 and should remain vigilant. LCK requires a parent or carer present with any child under the age of 16 whilst using our support services. An over view of the steps we take Due diligence in the on boarding of volunteers Website members only Registration & consent of members Manual registration verification by team volunteers Age specific channels Terms Of Use Reminder messages about the rules before posting Ongoing part time moderation Ask our members to report concerns Read our Safeguarding Policy Where can I raise issues or concerns? If you have any ongoing concerns that have not been resolved by a moderator please contact the safeguarding officer. In the first instance; Safeguarding Officer Senior Officer Sarah Priest. spriest@longcovidkids.org Unresolved concerns; Safeguarding Lead LCK CEO Sammie Mcfarland smcfarland@longcovidkids.org Where can I find out more? For general enquires about our support services please email supportservices@longcovidkids.org Read our Safeguarding Policy. Read our Terms and Conditions. I have registered on the website but I keep getting “You don’t have permission to access this page” Once you have registered you will be emailed a form to complete giving further details on how to register. This form needs to be completed before access to the LCK Connected booking area and Chatbox is granted. This email sometimes goes into your spam folder, so check there first. If it isn’t there please email supportservices@longcovidkids.org for assistance. I have completed a form and have only been granted access to one area of the support services website. To allow you the opportunity to post in Chatbox in complete confidence your registration only allows you access to one part of the site. For example if on the registration form you specify the user of the website will be parent and caregiver, you will only be granted access to those areas. To get access for your child they will need to register using a DIFFERENT email specifying the age group they would like access to. Email supportservices@longcovidkids.org for further assistance. I have completed the form and I still cannot access the page Try refreshing your browser and trying again. The page sometimes needs a little patience to load, so do give it a chance. I have registered on the website and have been given access to the wrong area, what can I do? If you have been given access to the incorrect area, please email supportservices@longcovidkids.org with the details of the correct are you would like access to and we will amend it for you. What is Long Covid ? Long Covid is the name for the symptoms that carry on for more than four weeks after someone gets COVID-19. It is a descriptive title given by the people who are living with Long Covid to help explain the difference between initial COVID-19 symptoms and ongoing symptoms. How long does it take to get better from Long Covid? We wish we had the answer to this question, but because Long Covid is so new, we just don’t know yet. We can tell you what we know so far. Many children get better in less than three months Some children take longer to get better. Some children have not recovered yet but have improved. There are also some children who have not seen improvement. So as you can see it is a very tricky question to answer. We have learn't a lot since 2020, and there are lots of ways to reduce symptoms to make them more manageable. Some symptoms can be treated. Your doctor will be able to give you and your family some advice about these. Scientists are working hard to understand Long Covid and to develop treatments which we all hope will make people better. Who gets Long Covid? Both children and grown-ups can experience long-lasting symptoms. Because Long Covid is new, we don’t know why some children experience symptoms that seem to go on and on, and why others don’t. This is one of the things doctors and scientists are working on right now. Who can I talk to? Managing any new situation or change in health can cause worry. It’s okay to cry, feel worried or angry but if these emotions become too difficult to deal with, know that there are people who will want to help you manage these feelings. Share how you feel with a trusted adult. There are lots of people who can offer support. Think about who you can talk to at school or at home. You can talk to one of the health care professionals involved in your care. There are many organisations like ChildLine listed at the bottom of his page. It can also help to talk to people who are a similar age to you who have had a similar experience to you. Lots of children have told our team that they enjoy the free online LCK Connected Zoom HangOut sessions we offer, and they like chatting with the friends they make in ChatBox our online forum. You are not alone. There are people who want to help, including us. “What is the bravest thing you’ve ever said” asked the boy, “Help” said the horse.” Charlie Mackesy Kooth Available as an app or on a desktop, Kooth is for CPY age 10-25 and is free, safe, anonymous support accredited by BACP. The Mix 0808 808 4494 (3pm-12am daily) Various avenues of support such as live chat, discussion boards and helpline for CYP age 10-25. Young Minds Textline. Text YM to 85258 (free from EE, O2, Vodafone, 3, Virgin Mobile, BT Mobile, GiffGaff, Tesco Mobile and Telecom Plus). Provides free, 24/7 text support for young people across the UK experiencing a mental health crisis. All texts are answered by trained volunteers, with support from experienced clinical supervisors. Young Minds Website This is a great website that a child or young person can access with excellent resources. Parents can also access it for ways to help support their children. The Emotional Wellbeing and Mental Health Service (EWMHS) Provides advice and support to children, young people and families who are in need of support with their emotional wellbeing or mental health difficulties. Can I talk to other kids with Long Covid? Yes. Lots of children have told our team that they enjoy the free online Zoom HangOut sessions we offer, and they like chatting with the friends they make in ChatBox. ChatBox is an online space for kids living with Long Covid. Kids between the ages of 8-17 years can chat online, be kids, and support each other. There is a different space for each age group to connect with other kids who are in the same age group and who maybe going through a similar experience. It is a great way to make new friends who ‘get it’. If you are under 16 you will need to ask your parent or caregiver to complete the registration form, if you are over 16 you can complete this for yourself. ChatBox Online Forum Online chat forum for kids living with Long Covid. Separate channels for ages; • Age 8-11 years • Age 12-14 years • Age 15+ years • Parents & caregivers ChatBox members can choose to engage in specific topics and discussions that interest them. Connect with other kids who are the same age, or share similar interests and form supportive friendships. ChatBox can be used in between LCK Connected sessions to nurture relationships and gain support. Find out more LCK Connected LCK Connected offers weekly Zoom HangOuts led by our experienced volunteer team and provides a welcoming session for children from ages 6-17 years, parents and caregivers. Members can actively participate and chat with cameras on, others pop in to say ‘Hello’ at the start and then switch their camera off, hang out, chill and listen. Members often choose to continue discussions, friendships and peer-to-peer support via ChatBox Find out more What if nobody believes me ? Long Covid is new, and everybody is learning. Try to talk to your family or trusted adult about how you are feeling. Try to explain how your symptoms affect you. You may find it helpful to show them the information on this website to help them understand more about Long Covid. Consider reaching out to a trusted adult from your extended family (e.g Aunt, Grandparent) or somebody at school. They might be able to help speak to your family for you or with you. Depending on your age you have different rights to seek support without consent and whether or not this support has to be kept private or confidential. You could phone your GP to seek support and they will assess whether you have the capacity to do this. Can I consent to my own treatment? People aged 16 or over are entitled to consent to their own treatment. This can only be overruled in exceptional circumstances. If you are under the age of 16 you can consent to your own treatment if you’re believed to have enough intelligence, and competence to fully understand what’s involved in your treatment. This is known as being Gillick competent. Can I refuse to have treatment? If you refuse treatment, and that refusal could cause you serious harm, your decision can be overruled by the Court of Protection. This is the legal body that oversees the operation of the Mental Capacity Act (2005). If you have refused treatment your parents may consent for you, but it’s usually thought best to go through the courts in this situation. Do I have a right to keep my treatment confidential? Yes. Article 16 of the UN Convention states that children have a right to privacy. This means that you are entitled to respect for privacy and confidentiality, for example, in getting advice and counselling on health matters, depending on your age and understanding. Breaking confidentiality is done only when it is in the best interest of you or the public, required by law or if you give your consent.

Galleria dei sintomi di Covid Kids lunga LONG COVID KIDS CONNECTED ​ The information provided by Long Covid Kids (LCK) aims to raise awareness of the symptoms of Long Covid and related illnesses in children to increase understanding, aid early diagnosis and improve response and intervention. The content is intended for individual parents, healthcare, and educational professionals, in addition to expert forums, research panels, health organisations & parliamentary groups. LCK is not a not substitute for professional medical advice and neither advocate for nor endorse the use of any drug or therapy contained within any publications. We strongly recommend that users consult a medical professional or healthcare provider if they seek medical advice, diagnoses, or treatment. Any information on specified diagnosis, treatments, and follow-up needs to be independently verified to ensure it is appropriate. The information included in the LCK website is provided on an "as is" basis without any representations, conditions, or warranties that it is accurate and up to date. Any opinions or recommendations discussed are not endorsed by LCK. To the fullest extent permitted by law, LCK shall not incur any liability, including without limitation, liability for damages, arising from the content. All conditions, warranties, and other terms which might otherwise be implied by the law including, without limitation, the warranties of satisfactory quality, fitness for a particular purpose, use of reasonable care and skill, and non-infringement of proprietary rights are excluded. ​ Long Covid Kids Connected is a service consisting of online zoom sessions for young people with Long Covid aged between 6 and 17, and administered by volunteers from the Long Covid Kids charity. ​ The aim of the sessions is to provide an opportunity for social interaction online in a safe, relaxed and supportive atmosphere. Sessions will be held twice weekly for each age group on Wednesdays and Sundays. These are available to members and booked online. ​ Sessions are not intended to constitute or deliver medical advice or to diagnose, treat or cure Long Covid. Participants are encouraged to share if they feel comfortable, but there is no pressure to do so. ​ There will always be at least one Administrator in the online support room. The role of the Administrator is to ensure the rules for participation are understood and adhered to by all participants, and that the support group is a safe place for all users. Administrators are not necessarily qualified in a medical or educational capacity, and will not provide any medical advice. Terms and Conditions Registration You must complete and submit a registration form prior to attending any sessions. Attendance There is no minimum attendance commitment or expectation. Age Limits You must be aged between 6 - 17 to participate in the online sessions. There are three age groups: 6 – 11, 12 – 14 and 15 – 17, so as to ensure that participants can choose the group that best fits their stage of education. There is also a seperate parents and caregivers session. Parents Parents should avoid contributing and/or dominating the conversation, as this is a space for the young people to speak if they wish, and parents can encourage them to do so. Respect for Others Open communication is encouraged with the group, but you should always be aware of how your words may impact on others. Please respect others and listen to what they have to say. Sharing You are welcome to share ideas and solutions that have worked for you in terms of your recovery / illness, but as support rather than advice. You should let others decide for themselves if it might work for them too. No-Go Areas You must not share any comments, questions or language that may be construed as offensive, harassing, obscene, profane, threatening, abusive or invasive or a person’s privacy. This includes swear words and abbreviated swear words. You must not share any comments that may be construed as discriminatory on the basis of race, gender, sexual orientation or religion. You must not share any personal contact details, or ask anyone for theirs, for your own privacy and safety. This includes email addresses, phone numbers, addresses and gaming tags. You must not divulge anything shared during the online sessions outside the Group, otherwise it will compromise our Safe Space. Reporting Should anyone disclose anything of concern, the Administrator has a duty to report this to the relevant contact. Should anything in the sessions concern you please email Sarah Priest, Senior Moderator spriest@longcovidkids.org Mics and Cameras Mics should be switched on throughout the session. Cameras should be switched on at the start for check-in, and can then be turned off if preferred. Problems In the event of any issues or problems, parents should contact Sarah Priest, Senior Moderator immediately on spriest@longcovidkids.org ​ ​

Galleria dei sintomi di Covid Kids lunga General Enquiries: info@longcovidkids.org If you are a journalist with a press enquiry or interview request, please contact: Anthony Burr anthony@burrmedia.co.uk / +44 7766 459469 Registered Address - Fletcher & Partners, Crown Chambers, Bridge Street, SALISBURY. SP1 2LZ Feedback Form First Name Last Name Email Message Send Thanks for submitting!

CHE COSA È LONG COVID? Paediatric Inflammatory Multisystem Syndrome Also Known As Multisystem Inflammatory Syndrome In Children PIMS-TS / PIMS / MIS-C for short. Paediatric Inflammatory Paediatric Inflammatory Multisystem Syndrome is deemed to be a rare condition thought to be triggered by COVID-19. Although it is a relatively new condition, it can be detected early and treated successfully. PIMS-TS PIMS-TS is commonly misdiagnosed because it is new and because symptoms are similar to other childhood conditions. However, all children with PIMS will have a fever (>38 degrees), which persists over several days and may not reduce with over-the-counter medications. Tell your medical professional if your child is likely to have been exposed to COVID-19. Concerned Your Child Has PIMS If you are concerned that your child has PIMS please seek immediate medical attention without delay. You may find it helpful to show your Doctor the information on this page. The Symptoms of PIMS What are the symptoms of PIMS? ​ The following symptoms can occur in conjunction with a temperature and you should seek immediate medical advice: ​ Rash Tiredness, sleepiness or fatigue Muscle pain Tummy pain or cramps Red and cracked lips, often swollen Strawberry tongue Swollen fingers, toes, or hands and feet, often red Cold hands and feet Peeling skin on hands and feet Headache Red bloodshot eyes Muscle aches and pains Diarrhoea and vomiting Racing heart Dizziness Swollen neck glands Unexplained irritability ​ Some children may not experience all the symptoms If your child develops chest pain, please call the emergency services immediately. Are PIMS-TS and MIS-C the same thing? Yes. In the UK, PIMS-TS stands for Paediatric Inflammatory Multisystem Syndrome, temporally associated with SARS-CoV-2. It is often shortened to PIMS. In the US and internationally it is referred to as Multisystem Inflammatory Syndrome in Children (MIS-C). PIMS-TS is a treatable condition requiring prompt medical treatment. More information from the Evelina Children's Hospital for parents More information from the Evelina Children's Hospital for clinicians More information from the CDC for parents More information from the CDC for clinicians What is PIMS-TS? PIMS-TS is a new systemic inflammatory disease that mainly affects children and young people. The syndrome is caused by a SARS-CoV-2 infection leading to inflammation throughout the body. Inflammation is a normal response from the body’s immune system to fight infection. However, sometimes the immune system can go into overdrive. In PIMS the inflammation is excessive and damaging to the body. For a disease to be classed as rare it affects less than 1 in 2000. Since March 2020 there have been almost 3000 cases of PIMS-TS in the UK alone. PIMS-TS is a treatable condition requiring prompt medical treatment. More information from the Evelina Children's Hospital for parents More information from the Evelina Children's Hospital for clinicians More information from the CDC for parents More information from the CDC for clinicians What are the symptoms of PIMS-TS? All children with PIMS-TS will have a fever >38 degrees C which persists for 24 hours or longer and may not reduce with over-the-counter medications. There is a wide range of other symptoms that children might have, including: Rash Tiredness, sleepiness or fatigue Muscle pain Tummy pain or cramps Red and cracked lips, often swollen Strawberry tongue Swollen fingers, toes or hands and feet, often red Cold hands and feet Peeling skin on hands and feet Headache Red bloodshot eyes Muscle aches and pains Diarrhoea and vomiting Racing heart Dizziness Swollen neck glands Unexplained irritability PIMS-TS is commonly misdiagnosed because: 1. It is a new syndrome 2. It is not commonly seen by doctors 3. Because symptoms are similar to other childhood conditions. 4. Children who experience PIMS-TS may have had an asymptomatic infection 5. Children may not have been previously unwell with COVID-19 6. Children can seem to recover from the acute infection and then develop PIMS-TS 7. The symptoms of PIMS-TS generally don’t appear until 4-6 weeks after SARS-CoV-2 infection. Because PIMS tends to develop after the infectious stage, a PCR test is unlikely to be positive for SARS-CoV-2 at this time. Tell your medical professional if your child has had a positive COVID-19 test or is likely to have been exposed to Covid-19. As with Long Covid, a positive COVID-19 test is not essential for diagnosis. However, knowledge of exposure to Covid-19 supports the diagnosis. We don’t yet know enough about how frequently children who get PIM-TS go on to experience Long Covid. Long Covid Kids have been highlighting in official meetings that non-hospitalised presentations consistent with PIMS have been seen in our support services since 2020. PIMS-TS is a treatable condition requiring prompt medical treatment. More information from the Evelina Children's Hospital for parents More information from the Evelina Children's Hospital for clinicians More information from the CDC for parents More information from the CDC for clinicians What should I do if my child is unwell with the symptoms of PIMS-TS? PIMS-TS is a treatable condition requiring prompt medical treatment. If you think that your child may have PIMS-TS or you are concerned, call your GP or NHS 111 (UK) immediately. If your child develops chest pain, call Emergency Services on 999 (UK) Whilst most children won’t be seriously unwell with SARS-CoV-2 infection, some children may develop PIMS-TS. The most important thing to remember is that any child who is seriously unwell needs to be treated quickly – whatever the illness. There aren't any specific tests for PIMS. Doctors will consider the information available and rule out other more common conditions that cause similar symptoms – including Kawasaki Disease, Sepsis and Toxic Shock Syndrome. Finally, the doctor will be able to work out what treatment is best for your child. If your child is not diagnosed with PIMS and continues to have symptoms consistent with PIMS please get a second opinion. More information from the Evelina Children's Hospital for parents More information from the Evelina Children's Hospital for clinicians More information from the CDC for parents More information from the CDC for clinicians Are Black or Asian children more likely to be affected? Children from all ethnic minority backgrounds are reported to be affected by PIMS. There have been more children affected by PIMS who are from Black and Asian backgrounds, but it is not yet clear why. More information from the Evelina Children's Hospital for parents More information from the Evelina Children's Hospital for clinicians More information from the CDC for parents More information from the CDC for clinicians What if my child has not had COVID-19? Children can experience asymptomatic illness with COVID-19. This means a child may have had COVID-19 without showing any symptoms. Seek medical advice if your child has the symptoms of PIMS even if you don't think they have previously had COVID-19. The doctors will rule out other more common conditions that cause similar symptoms – this includes things like Kawasaki Disease, Sepsis and Toxic Shock Syndrome. More information from the Evelina Children's Hospital for parents More information from the Evelina Children's Hospital for clinicians More information from the CDC for parents More information from the CDC for clinicians How is PIMS diagnosed and treated? Doctors check how well various organs are working and perform blood tests to look at the levels of inflammation in the body. These results together with symptoms guide the doctors to a diagnosis of PIMS. PIMS can be treated with a combination of medicines to reduce inflammation in the body and temporarily “switch off” the hyperactive immune system • Intravenous immunoglobulin (IVIG). • Corticosteroids • Anti-clotting medicines Aspirin and Dalteparin /Clexane) • Biologic medicines (Anakinra and Tocilizumab) We don’t yet know enough about how frequently children who get PIM-TS go on to experience Long Covid. Long Covid Kids have been highlighting in official meetings that non-hospitalised presentations consistent with PIMS have been seen in their support services since 2020. Treatment must be prescribed by a doctor. More information from the Evelina Children's Hospital for parents More information from the Evelina Children's Hospital for clinicians More information from the CDC for parents More information from the CDC for clinicians Are children hospitalised with PIMS? For a disease to be classed as rare it affects less than 1 in 2000. Since March 2020 there have been almost 3000 cases of PIMS-TS in the UK alone. Find more information in the Long Covid Kids Child Specific COVID-19 Infection Analysis Blog Updated March 2021 More information from the Evelina Children's Hospital for parents More information from the Evelina Children's Hospital for clinicians More information from the CDC for parents More information from the CDC for clinicians Do children die from PIMS? Until December 2021 we were unable to find any public data. In December 2021, 1 child PIMS-TS death was reported. Updated Feb 2022 What follow up care should be offered to a child recovering from PIMS? According to the American Academy of Paediatrics (AAPS) children diagnosed with PIMS should receive; Outpatient paediatric cardiology follow-up starting 1 to 2 weeks after discharge from the hospital. Timing should be determined in consultation with a pediatric cardiologist Children with a myocardial injury must have cardiology directed restriction and/or release for activities. Children who receive steroid therapy or treatment with biologics should receive follow-ups with the paediatric rheumatologist after discharge. Primary care follow-up is recommended for all patients. Children and young people usually recover well from PIMS. Some children and young people may develop Long Covid. Should patients with a history of PIMS receive the COVID-19 vaccine? According to the AAP in the USA children with a history of PIMS / MISC should consider delaying vaccination until after they have recovered from illness (including a return to normal cardiac function) and for at least 90 days following their diagnosis of PIMS /MIS-C. Currently, there are limited data about the safety and efficacy of the COVID-19 vaccine in children with a history of PIMS / MISC. It is recommended that paediatricians and families should participate in shared decision making and consider the risks and benefits of COVID-19 vaccination for each patient. The CDC offers additional guidance. Children who have received monoclonal antibodies or convalescent plasma as part of their treatment should wait at least 90 days before receiving the COVID-19 vaccine. What is Long Covid? Long Covid is the term given to the ongoing signs and symptoms caused by SARS-CoV-2 infection. It is generally used to indicate symptoms and clinical signs that remain unresolved for four weeks or longer. Symptoms of Long Covid can also appear some time after an asymptomatic infection. Long Covid was coined by patients who challenged the early COVID-19 guidelines that stated people recovered from mild cases within two weeks. It is called other terms around the world such as Post-COVID-19, Post Covid Condition, and Post-Acute Sequelae of COVID-19 (PASC). Long Covid was first recognised by patients at the beginning of the pandemic when they noticed that symptoms such as those of pneumonia, chilblain like sores and many others were not resolving with time. This history has been peer-reviewed and published Research conducted by both patients and clinical scientists has since proven that the prolonged signs and symptoms of SARS-CoV-2 infection can include damage and dysfunction to all body systems and organs. Symptoms range from chronic loss of smell and fluctuating rashes to neurological and neuropsychiatric symptoms. Some children living with Long Covid have also eventually received a new diagnosis of conditions such as Paediatric Acute-Onset Neuropsychiatric Syndrome (PANs), narcolepsy and organ damage. A booklet published by the National Institute of Health and Care Excellence (NICE), Scottish Intercollegiate Guidelines Network (SIGN) and Royal college of General Practitioners may help explain more. There is no specific test or biomarker for Long Covid and diagnosis is generally by exclusion of other illnesses and syndromes. Some specific tests like a SPECT scan, however, can reveal covid related damage, such as damage to the small vessels in the lung. Many people living with the disease were previously fit and healthy. Scientists are currently working hard to discover biomarkers for Long Covid and there are a number of promising studies nearing completion. NICE produced a rapid guideline on the management of Long Covid in November 2021. They described Long Covid as the presence of signs and symptoms that develop during or following an infection consistent with COVID-19 which continue for 12-weeks or more and are not explained by an alternative diagnosis. This includes both ongoing symptomatic COVID-19 (from 4 to 12 weeks) and long term consequences of COVID-19 (12-weeks or more). Long Covid Kids is referenced as a resource in this document. See Long Covid Physio for more information. How much do we understand about Long Covid? The National Institute for Health Research (NIHR) Second Themed Review on Long Covid stated there may be grounds to understand Long Covid as up to 4 syndromes with different underlying causes and treatment needs. These could include: Long Term Organ Damage Post Viral Syndrome Post Intensive Care Unit (ICU) Syndrome Potentially an entirely novel syndrome separate from the others that could more specifically and uniquely be identified as "Long Covid". It is important to note that these long-term effects on health may coexist in the same person. A note on Post ICU syndrome: Post ICU syndrome is a well known phenomenon in medicine and points to the long-term impact of the intensive care experience on a patient. Doctors and researchers must distinguish the effects of Post ICU syndrome from the damage caused directly by Covid. They both can persist even after hospital discharge. Most children do not need ICU treatment for Covid and related conditions, but this might happen in some cases, for example, with PIMS/ MIS-C. These syndromes are consistent with the experiences shared in Long Covid Kids Support Services. It's going to take years to understand the full impact of SARS-CoV-2 but there are many studies underway seeking to understand and track Long Covid in the UK and globally. Long Covid Kids are proud to be involved in coproducing research and representing lived experiences. Long Covid Kids and others who are speaking up for children are also working hard to ensure transparency of data. As it stands the prevalence of Long Covid is not counted in UK statistics nor do we know the outcome of the child Covid-19 hospital admissions each month. Long term friend to Long Covid Kids, Dr Elaine Maxwell, has recently called for a National Sentinel Audit of Long Covid to obtain standardised data. We do however, have the benefit of our world renowned Office for National Statistics estimates and hope that this vital reporting service will continue. Who can get Long Covid? Anyone, of any age can get Long Covid regardless of the severity of COVID-19 infection. Asymptomatic infection can lead to Long Covid Mild infection can lead to Long Covid Severe infection can lead to Long Covid Long Covid is more often found in non-hospitalised people. Are some people more 'at risk' of getting Long Covid? We don't yet know which children will develop Long Covid. However, early data indicates that those who fall into the following groups appear to have increased risk factors; Female Being young, fit, and healthy Atopy - eczema, asthma, hay fever. Allergy to animals / cats Previous Post Viral Fatigue Ehlers-Danlos syndromes Fibromyalgia Irritable bowel syndrome We need more research to answer this question. Most people recover well from Sars-CoV-2 infection. Anyone who gets COVID-19 may develop symptoms of Long Covid. When do the symptoms of Long Covid start? New and ongoing symptoms lasting more than 4 weeks after COVID-19 infection could be Long Covid. Long Covid most often occurs at around 4-6 weeks after initial COVID-19 infection but can immediately follow the acute phase of COVID-19 infection, or develop at a later date too. It is not uncommon for children to have a gap between COVID-19 infection and Long Covid. Due to the delay in onset of the symptoms of Long Covid we recommend giving children time to convalesce after COVID-19 infection and be cautious about rushing back to activities, including education. It is well documented by people with lived experience, and from other post-viral conditions, that activity can exacerbate symptoms significantly. It is wise to take a cautious approach. For more guidance on recovery please see our support resources developed by people living with Long Covid for families. Cautious Tortoise - #LessHareMoreTortoise Pacing Penguins - #PacingPenguins Tipis for Teachers - #Tips4Teachers How common is Long Covid in children? The NIHR funded paediatric study into Long Covid is called the Clock Study. Their initial findings published in August 2021 showed that 14% of children can go on to develop Long Covid. This means about 2-4 children in each classroom could statistically develop Long Covid. How much impact can Long Covid have on daily life? Long Covid can significantly impact the daily life of children and young people. At the start of 2021 LCK conducted a study of our members which is published as a pre-print. This bar chart shows the effect of infection on children as reported by their families. Some children have one or two symptoms that can impact their daily life occasionally. Some children are living with chronic and disabling symptoms that significantly impact their daily life a lot. Some children have life-altering symptoms that significantly impact their daily life a lot. This bar chart shows some of the specific ways that families reported their children were affected. Physical Activity "Overall, we found that most children had worse activity levels than before infection, since, at the time of the survey, 21.2% were currently unable to enjoy any activity and 30.2% enjoyed the occasional activity but usually had an increase of symptoms after" Mental Health "Parents reported a wide range of neurocognitive symptoms, including lack of concentration, difficulty processing/remembering information or understanding instruction, short term memory issues and struggles to find the right words" Our study is representative of the experiences of children living with Long Covid and evidences the need for further research into the impact of COVID-19 on children. Does my child need to have a confirmed positve COVID-19 or antibody test to receive a diagnosis of Long Covid? No a doctor can make a clinical diagnosis without evidence of a confirmed COVID-19 test. WHO Clinical Case Definition A negative antibody test should not be used to exclude Long Covid as a diagnosis. Research shows that 36% of people living with Long Covid don't seroconvert and women are 4x more likely to seroconvert. This means people living with Long Covid may not develop antibodies. When can my child receive support for their symptoms? In the UK any child that has symptoms of COVID-19 for more than 4 weeks is eligible for a referral to a NHS Long Covid Hub. To obtain an appointment a GP must refer children to the local paediatric team. If the local team is unable to offer support children can be referred to the nearest Long Covid Hub. You do not have to live in the same area as the hub to receive a referral. Find a hub. ​ How long will it take for my child to get better? We don't know how long it will take for each child to get better from Long Covid. Reports of experiences from families vary. Some studies report that children get better between 3 - 6 months. ​ Many children in our support group have been ill since March 2020 and continue to experience relapsing and remitting symptoms that significantly impact dailly life. This means their symptoms can come and go, and can mild or severe. Some children have been ill since March and report to feel '"85% recovered" if they follow their individualised health regimes, including Pacing. See child specific guidance in Pacing Penguins. ​ It is not uncommon to have a period of apparent recovery and then develop symptoms again 6 months later. Some families report new symptoms over a year after infection. It is useful to remember that recovery isn't linear. This means that the path to recovery isn't a straight line. For most people it is very wiggly. Symptoms can increase and decrease in serverity. This means symptoms may come and go and they may sometimes be better, and sometimes be worse. What are the symptoms of acute COVID-19 infection in a child or teenager? Like adults, children can have an asymptomatic (displaying no symptoms), or symptomatic acute COVID-19 infection. A comprehensive list of COVID-19 symptoms can be found on the CDC website. The NHS updated its symptoms list in April 2022 Long Covid Kids have been calling for an improved COVID-19 symptoms list since, winter 2020, from the NHS and Government websites because the ‘classic’ three symptoms of cough, loss/change of smell/taste, and fever do not appear to pick up early infections in children. A survey of members in our support group showed that children often present with: Rashes Fever Sore Throat Headaches Nausea Emotional Dependency Mood changes Diarrhoea Tummy Pain Cold Like Symptoms Since Omicron children coming through our support services can also report: Pain Bloating Joint Pain We are deeply concerned that free testing has been withdrawn. Accessing ongoing support without a positive test can be more challenging and we advise getting a PCR or LFT test if possible. Please seek medical attention whenever your child is unwell. I think my child or teenager has COVID-19, when should I get a test?" Get a test immediately if you can. The following info was added before free. testing was withdrawn in the UK. We stand by this recommendation but recognise that it may not be possible to get a test. Please BOOK a COVID-19 PCR test immediately if you suspect COVID-19 infection. Any sign of being unwell in a child could potentially be a COVID-19 infection. Please see the FAQ above on symptoms for more information on the typical symptoms children may present with. Children often present with different symptoms to adults, listen to your gut instinct and protect your community. You know your child best. A confirmed positive COVID-19 test will make it easier to access medical support for your child should they go on to develop Long Covid and help to accurately record the number of child COVID-19 cases. For moral, emotional, or practical support please join our support services where you will find a wide range of experiences from families around the world. Does it matter if I don’t get my child tested? In short, Yes. Register any positive result Not only does it make the numbers of child COVID-19 cases appear lower if you don’t test, but parents and carers report it is harder to get ongoing medical support, if needed, without a positive test result. Without a test, you may find it difficult to get the correct diagnosis, and you may get misdiagnosed. The government should use the data to inform their decision-making. My child has passed the isolation stage but still has symptoms, do they still need to isolate?" We are not qualified to advise. When Test and Trace contact you they should advise on the dates for isolation (usually a period of 10 days from symptoms or positive test) and on the circumstances under which your child should remain isolated. If they don’t, do feel free to ask, you can phone 119 if you have any queries. However, many children with Long Covid have had ongoing symptoms for many months (some have been struggling since early 2020) and they are not in isolation and not considered to be infectious. If your child has ongoing symptoms past the initial isolation stage do contact your GP for further advice and guidance. Can my child get COVID-19 again? Can you get COVID-19 more than once? My child has COVID-19, can the rest of the household get reinfected?" Yes, there is growing evidence that anyone can get reinfected with COVID-19, even after vaccination. This is particularly the case as the virus develops new variants. There are multiple reports in our support services of reinfection, with some reports of up to 4 confirmed infections. Some children have antibodies after initial infection, others do not. Further research is required to understand more. Recent research shows that antibodies wane at 6-8 months. Where possible isolate any positive cases away from the rest of the household and particularly those who are clinically vulnerable although we recognise that this is not easy with very young children. Other mitigations you may consider are using masks, improving ventilation in the home by opening windows, hand washing, and wiping down frequent contact surfaces such as light switches, door handles, and the bathroom. Make sure to flush the toilet with the seat down. Updated April 2022 We now have reports that some children who did not develop Long Covid after their 1st COVID-19 infection, have developed Long Covid with a 2nd or 3rd infection. Children who have Long Covid, and are reinfected report a mix of experiences, some experience no change in symptoms, others experience significant relapse. PIMS-TS Please see What is PIMS for more detail. Paediatric inflammatory multisystem syndrome temporally associated with SARS-CoV-2 (PIMS-TS) is also known As Multisystem inflammatory syndrome in children (MIS-C). It is often referred to as PIMS-TS or PIMS for short. PIMS is a new condition triggered by a SARS-CoV-2 infection and isn't common. It can be detected early and treated successfully. All children with PIMS will have a fever, which persists over several days. There is a wide range of other symptoms that children might have too. A few of these include tummy pain, diarrhoea, vomiting, rash, cold hands and feet and red eyes. These symptoms can also be found in other illnesses. The most important thing is to remember that any child who is seriously unwell needs to be treated quickly – whatever the illness. If the child has a temperature of 38⁰ or higher, cold hands and feet and is sleepy, call your GP or 111. If symptoms persist and you have not been able to speak to either a GP or 111, take your child to the nearest A&E. If your child doesn’t have these signs of being seriously unwell but you are still concerned, talk to your GP. My child is experiencing sudden onset of mental ill health symptoms such as Obsessive Compulsive Disorder, Anxiety or Tics or Hallucinations. Is this linked to COVID-19? What is PANS/PANDAS?" Some of these symptoms can be a linked to fever or the post viral condition however this could be a neuropsychiatric condition. PANS and PANDAS are closely associated with infections and viruses. Both the initial onset and subsequent exacerbations are usually incited by a variety of childhood infections. From: PANS PANDAS UK PANS (Paediatric Acute-onset Neuropsychiatric Syndrome) PANS is a neuropsychiatric condition which is triggered by a misdirected immune response which results in an inflammation of a child's brain. ​PANS is a clinical diagnosis and there is no specific test which will prove or disprove the condition. In order for a diagnosis to be made, presentation of the following symptoms must occur: PANS Diagnostic Criteria ​An abrupt, acute, dramatic onset (usually within 24-48 hours) of obsessive compulsive disorder (OCD)* or severely restricted food intake** along with two or more of the following symptoms which are not better explained by a known neurologic or medical disorder. ​Anxiety (heightened anxiety, separation anxiety, irrational fears, panic episodes) Tics Emotional lability and/or Depression Irritability, Aggression, and/or Severely Oppositional Behaviours Behavioural (Developmental) Regression (increase in temper tantrums, loss of age-appropriate language, clingy behaviour not related to anxiety). Sudden Deterioration in School Performance (due to difficulties with memory, concentration, hyperactivity, impulsivity, new deficits of visuospatial skills) Motor or Sensory Abnormalities (dysgraphia, clumsiness, tics, new sensory sensitivities to light, noise, smell, taste or texture). Insomnia and/or Sleep disturbances Enuresis and/or Urinary frequency Whilst not part of the diagnostic criteria, in approximately 25% of cases there have been reports of Psychosis and/or Hallucinations PANDAS (Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) ​PANDAS is a subset of PANS. Similarly, it is a neuropsychiatric condition which is triggered by a misdirected immune response to a Streptococcal infection which results in an inflammation of a child's brain. PANDAS Diagnostic Criteria ​Usually starting with an acute onset of obsessive compulsive disorder and/or tics, particularly multiple, complex or unusual tics. PANDAS symptoms can then appear to wax and wane with the child experiencing flares periodically, following illness or periods of stress. The child is usually between the ages of 3 and puberty when first symptoms occur and usually appear following a streptococcal infection such as Sinusitus, Ear infections or Scarlet Fever. In some cases children can carry the streptococcus bacteria without showing signs of illness. Whilst it is not a diagnostic requirement, in addition to OCD* and/or tics, children may also experience co-morbid symptoms similar to those seen in PANS.​ * OCD may include any of the following: Contamination obsessions and compulsions Obsessions that harm will come to others and/or related compulsions Sexual or religious obsessions Repeating compulsions Symmetry and exactness obsessions Ordering/arranging compulsions Counting compulsions Checking obsessions or compulsions Excessive reassurance seeking Need to touch, tap or rub Intrusive images, words, music or nonsense sounds Ritualised eating behaviours​ ** Severely Restricted food intake may be related to contamination fears, obsessional fears of choking, or other obsessional fears including a new obsession with body image or weight. ​ Make an appointment with your GP to discuss your concerns. Your GP may not be aware of PANS/PANDAS so do direct them to https://www.panspandasuk.org/for-medical-professionals and work together to determine what treatment to implement. Where can I find out more about COVID-19 Vaccines for children and young people? Please see The Royal College of Paediatrics and Child Health for information on vaccines. Information about the vaccine, its safety and side effects has been published by the UK Health Security Agency. Vaccination is not thought to eliminate the risk of Long Covid but early evidence does show that it may reduce risk. How can I reduce risk? Avoiding infection is the only known way to avoid Long Covid. LCK recommend following the advice of the World Health Organisation who have a specific page for young people. Layers of mitigation can help reduce risk of infection. Distancing Mask Wearing Hygiene Ventilation & Fresh Air Vaccinations Isolate when ill Videos Understand more about transmission. Find a mask that fits your face. Schools Support your school to encourage any children with any symptoms to stay home. This simple practice can help schools stay open and offer in person learning. Schools can offer hybrid learning options to maintain access to education for children and young people well enough to continue education at home. What support services do LCK offer? Long Covid Kids offer three online services. Site membership, registration and consent are required. We take safeguarding seriously. LCK Connected Guided Zoom Hang Outs are hosted by our team of volunteers for children and teenagers from 6 - 17 years, and the parents and caregivers who care for them. Participants are required to become a member of our website and compete our registration form before using this service. 6 - 12 Years Teens Parents & Caregivers Discord 13+ Facebook Groups Our moderated Facebook groups offer peer to peer support and signposting for families of children & young people living with Long Covid. A Facebook account & membership consent is required. Who are LCK support services for? Long Covid Kids support services are for families, children and young people living with Long Covid from around the world. Parents and Caregivers LCK Connected ChatBox Facebook Children and Young People ages 6 - 17 LCK Connected 6+ Chat Box 8+ Under 8's We are fundraising to be able to extend our services for under 8's. We are inclusive We believe in mutual respect, dignity, fairness, care and equality. We welcome and support all children, young people, their families and caregivers, from every community, without exception.We recognise the challenges families can face in obtaining a diagnosis and welcome members who have had suspected or confirmed COVID-19 infection living with ongoing symptoms. Register to join How do I register for the support services? How to Register Become a member of the WEBSITE using your name and email address. You can do this HERE. Check your inbox / spam folder for an email. Click the button in the email to complete the registration and consent form. Complete the form in full. Receive your 'Confirmation' email and login to access our support services. Login using the LOGIN button at the top of the website. Once you have logged in you can visit the ChatBox Members Page to view the forum and start chatting. Visit. your website profile to add your photo, edit your notification preference and use our support services any time. LCK take the safeguarding of children and young people seriously and require each person using our services to complete the registration process. This helps us to adhere to our Safeguarding Policy. Troubleshooting Please check you are logged into the website. To check that you are logged check you can see your name / profile showing in the top bar of the website. When you are logged in you can edit your notification preferences. There are other FAQs that you can read that might help too. For ongoing troubleshooting issues please contact supportsevices@longcovidkids.org for support. Are LCK support services free? Yes our services are free. We are a charity and rely on donations. Donations are welcome but not expected. Are there any support services for children under 8 years? We welcome children aged 6 - 7 years in LCK Connected if you feel it is the right space for them. LCK hope to be able to provide additional services for younger children soon. During the trial phase of our support services we identified that younger children need an alternative service to those currently on offer, but that some children age 6-7 years may enjoy LCK Connected. We hope to fundraise to be able to run play therapy sessions for younger children in the future. What safeguarding steps are in place? We take safeguarding seriously. LCK adheres to our safeguarding policy and do our best to screen attendees but parents and caregivers are responsible for the safeguarding of their children and young people under 18 and should remain vigilant. LCK requires a parent or carer present with any child under the age of 16 whilst using our support services. An over view of the steps we take Due diligence in the on boarding of volunteers Website members only Registration & consent of members Manual registration verification by team volunteers Age specific channels Terms Of Use Reminder messages about the rules before posting Ongoing part time moderation Ask our members to report concerns Read our Safeguarding Policy Where can I raise issues or concerns? If you have any ongoing concerns that have not been resolved by a moderator please contact the safeguarding officer. In the first instance; Safeguarding Officer Senior Officer Sarah Priest. spriest@longcovidkids.org Unresolved concerns; Safeguarding Lead LCK CEO Sammie Mcfarland smcfarland@longcovidkids.org Where can I find out more? For general enquires about our support services please email supportservices@longcovidkids.org Read our Safeguarding Policy. Read our Terms and Conditions. I have registered on the website but I keep getting “You don’t have permission to access this page” Once you have registered you will be emailed a form to complete giving further details on how to register. This form needs to be completed before access to the LCK Connected booking area and Chatbox is granted. This email sometimes goes into your spam folder, so check there first. If it isn’t there please email supportservices@longcovidkids.org for assistance. I have completed a form and have only been granted access to one area of the support services website. To allow you the opportunity to post in Chatbox in complete confidence your registration only allows you access to one part of the site. For example if on the registration form you specify the user of the website will be parent and caregiver, you will only be granted access to those areas. To get access for your child they will need to register using a DIFFERENT email specifying the age group they would like access to. Email supportservices@longcovidkids.org for further assistance. I have completed the form and I still cannot access the page Try refreshing your browser and trying again. The page sometimes needs a little patience to load, so do give it a chance. I have registered on the website and have been given access to the wrong area, what can I do? If you have been given access to the incorrect area, please email supportservices@longcovidkids.org with the details of the correct are you would like access to and we will amend it for you. What is Long Covid ? Long Covid is the name for the symptoms that carry on for more than four weeks after someone gets COVID-19. It is a descriptive title given by the people who are living with Long Covid to help explain the difference between initial COVID-19 symptoms and ongoing symptoms. How long does it take to get better from Long Covid? We wish we had the answer to this question, but because Long Covid is so new, we just don’t know yet. We can tell you what we know so far. Many children get better in less than three months Some children take longer to get better. Some children have not recovered yet but have improved. There are also some children who have not seen improvement. So as you can see it is a very tricky question to answer. We have learn't a lot since 2020, and there are lots of ways to reduce symptoms to make them more manageable. Some symptoms can be treated. Your doctor will be able to give you and your family some advice about these. Scientists are working hard to understand Long Covid and to develop treatments which we all hope will make people better. Who gets Long Covid? Both children and grown-ups can experience long-lasting symptoms. Because Long Covid is new, we don’t know why some children experience symptoms that seem to go on and on, and why others don’t. This is one of the things doctors and scientists are working on right now. Who can I talk to? Managing any new situation or change in health can cause worry. It’s okay to cry, feel worried or angry but if these emotions become too difficult to deal with, know that there are people who will want to help you manage these feelings. Share how you feel with a trusted adult. There are lots of people who can offer support. Think about who you can talk to at school or at home. You can talk to one of the health care professionals involved in your care. There are many organisations like ChildLine listed at the bottom of his page. It can also help to talk to people who are a similar age to you who have had a similar experience to you. Lots of children have told our team that they enjoy the free online LCK Connected Zoom HangOut sessions we offer, and they like chatting with the friends they make in ChatBox our online forum. You are not alone. There are people who want to help, including us. “What is the bravest thing you’ve ever said” asked the boy, “Help” said the horse.” Charlie Mackesy Kooth Available as an app or on a desktop, Kooth is for CPY age 10-25 and is free, safe, anonymous support accredited by BACP. The Mix 0808 808 4494 (3pm-12am daily) Various avenues of support such as live chat, discussion boards and helpline for CYP age 10-25. Young Minds Textline. Text YM to 85258 (free from EE, O2, Vodafone, 3, Virgin Mobile, BT Mobile, GiffGaff, Tesco Mobile and Telecom Plus). Provides free, 24/7 text support for young people across the UK experiencing a mental health crisis. All texts are answered by trained volunteers, with support from experienced clinical supervisors. Young Minds Website This is a great website that a child or young person can access with excellent resources. Parents can also access it for ways to help support their children. The Emotional Wellbeing and Mental Health Service (EWMHS) Provides advice and support to children, young people and families who are in need of support with their emotional wellbeing or mental health difficulties. Can I talk to other kids with Long Covid? Yes. Lots of children have told our team that they enjoy the free online Zoom HangOut sessions we offer, and they like chatting with the friends they make in ChatBox. ChatBox is an online space for kids living with Long Covid. Kids between the ages of 8-17 years can chat online, be kids, and support each other. There is a different space for each age group to connect with other kids who are in the same age group and who maybe going through a similar experience. It is a great way to make new friends who ‘get it’. If you are under 16 you will need to ask your parent or caregiver to complete the registration form, if you are over 16 you can complete this for yourself. ChatBox Online Forum Online chat forum for kids living with Long Covid. Separate channels for ages; • Age 8-11 years • Age 12-14 years • Age 15+ years • Parents & caregivers ChatBox members can choose to engage in specific topics and discussions that interest them. Connect with other kids who are the same age, or share similar interests and form supportive friendships. ChatBox can be used in between LCK Connected sessions to nurture relationships and gain support. Find out more LCK Connected LCK Connected offers weekly Zoom HangOuts led by our experienced volunteer team and provides a welcoming session for children from ages 6-17 years, parents and caregivers. Members can actively participate and chat with cameras on, others pop in to say ‘Hello’ at the start and then switch their camera off, hang out, chill and listen. Members often choose to continue discussions, friendships and peer-to-peer support via ChatBox Find out more What if nobody believes me ? Long Covid is new, and everybody is learning. Try to talk to your family or trusted adult about how you are feeling. Try to explain how your symptoms affect you. You may find it helpful to show them the information on this website to help them understand more about Long Covid. Consider reaching out to a trusted adult from your extended family (e.g Aunt, Grandparent) or somebody at school. They might be able to help speak to your family for you or with you. Depending on your age you have different rights to seek support without consent and whether or not this support has to be kept private or confidential. You could phone your GP to seek support and they will assess whether you have the capacity to do this. Can I consent to my own treatment? People aged 16 or over are entitled to consent to their own treatment. This can only be overruled in exceptional circumstances. If you are under the age of 16 you can consent to your own treatment if you’re believed to have enough intelligence, and competence to fully understand what’s involved in your treatment. This is known as being Gillick competent. Can I refuse to have treatment? If you refuse treatment, and that refusal could cause you serious harm, your decision can be overruled by the Court of Protection. This is the legal body that oversees the operation of the Mental Capacity Act (2005). If you have refused treatment your parents may consent for you, but it’s usually thought best to go through the courts in this situation. Do I have a right to keep my treatment confidential? Yes. Article 16 of the UN Convention states that children have a right to privacy. This means that you are entitled to respect for privacy and confidentiality, for example, in getting advice and counselling on health matters, depending on your age and understanding. Breaking confidentiality is done only when it is in the best interest of you or the public, required by law or if you give your consent. What we know about MIS-C ​ Multisystem inflammatory syndrome in children (MIS-C) is a condition where different body parts can become inflamed, including the heart, lungs, kidneys, brain, skin, eyes, or gastrointestinal organs. We do not yet know what causes MIS-C. However, we know that many children with MIS-C had the virus that causes COVID-19 , or had been around someone with COVID-19. The CDC states that MIS-C can be serious, even deadly, but that most children who were diagnosed with this condition have recovered with medical care. ​ Seek medical advice if concerned.

Galleria dei sintomi di Covid Kids lunga Download LCK Awareness Pack Sunday newsletter Long Covid è ancora oggetto di ricerca e comprensione. The Long Covid Kids Study. Mentre aspettiamo che la ricerca venga sviluppata, c'è così tanto che possiamo imparare da altre condizioni infiammatorie croniche. Il Covid lungo è una condizione multisistemica che richiede un approccio olistico. Ci auguriamo che tutta la ricerca possa portare benefici ai bambini di tutte le comunità con malattie croniche a lungo termine, molti dei quali fanno campagne da anni. Questa pagina contiene collegamenti a siti Web che abbiamo trovato utili. POTS UK Postural Tachycardia Syndrome (PoTS) can be a life altering and debilitating health condition. Button SCOTTISH INTERCOLLEGIATE GUIDELINES NETWORK A booklet for people who have signs and symptoms that continue or develop after acute COVID-19 Button ME ASSOCIATION Provides information, support and practical advice for people, families and carers affected by M.E. (Myalgic Encephalopathy), Chronic Fatigue Syndrome (CFS) and Post Viral Fatigue Syndrome (PVFS) Button LONG COVID PHYSIO Founded November 2020 by Physiotherapists living with Long COVID. Resources and advice on exercise and pacing. Button LONG COVID SUPPORT Long Covid Support was formed by a group of people struggling to recover from Covid-19, who found each other online and have been facilitating international peer support and campaigning in the UK for recognition, rehabilitation and research into treatments since May 2020 Button MASTCELL ACTION MCAS is part of a spectrum of mast cell disorders involving proliferation and/or excessive sensitivity of mast cells. MCAS causes a wide range of symptoms in any of the different systems of the body, frequently affecting several systems at the same time. Button ABSENT The Sense of Smell Project (SoSP) is a collaboration between patients with smell disorders and scientists. Button LONG COVID SOS Recognition - Research Rehab Button BRITISH HEART FOUNDATION The website features a coronavirus support hub with lots of helpful information. It also includes what Covid-19 means for you if you have a heart or circulatory condition Button DEPARTMENT OF WORK & PENSIONS Medical guidance for DLA decision makers (child cases): staff guide Button PANS/PANDAS PANS is a neuropsychiatric condition triggered by a misdirected immune response resulting in inflammation of a child's brain. Button NATURE DOC Integrated functional medicine supporting the body from the inside out Button ZERO COVID ALLIANCE Zero Covid Alliance focuses on gathering all the COVID community efforts across the globe, create new ones by providing accessible information based on the circumstances in the area, and empower the general public in making informed, health-conscious decisions. Button DYSAUTONOMIA Dysautonomia is an umbrella term used to describe several different medical conditions that cause a malfunction of the Autonomic Nervous System Button NHS LONG COVID Advice on managing lingering symptoms of Coronavirus from the NHS Long Covid Library and Knowledge Services Button NSPCC Coronavirus (COVID-19) advice and support for parents and carers Whether you're working from home with your kids for the first time or supporting children with anxiety due to coronavirus, we've got tips and Button

Galleria dei sintomi di Covid Kids lunga Support & Information If you are reading this page, it is probably because you, or someone you know, has ongoing symptoms following COVID. You may be wondering if you have Long Covid or have already been diagnosed with Long Covid. Or you may have a related illness that was triggered by COVID-19 like; Myalgic Encephalomyelitis (ME/CFS), Postural Tachycardia Syndrome (PoTS), or Paediatric Acute-onset Neuropsychiatric Syndrome (PANS). You are not alone. This page contains information and support for kids. ​ Who gets long covid? Children and grown-ups can experience long-lasting symptoms and, because Long Covid is still being researched, we don’t know why some children experience symptoms that seem to go on and on, and why others don’t. Doctors and scientists are working on this right now. Learn more what is long covid? Long Covid is the name for the symptoms that carry on for more than four weeks after someone gets COVID-19. It is a descriptive title given by the people who are living with Long Covid to help explain the difference between initial COVID-19 symptoms and ongoing symptoms. Some people call it Post Acute Covid Syndrome or PACS for short. Learn more do kids get better? Most children do recover well from initial COVID-19 infection. Doctors may tell us that most children recover well from Long Covid after about 3-6 months. Some children have different experiences and can be ill for much longer. There are lots of ways to manage symptoms, and some symptoms can be treated. Please seek advice from your doctor. ​ Learn more Connect Online With LCK Discord Would you like to hang out online with other kids who are going through the same thing and 'get it'? The LCK Discord server is open to young people aged 13 - 18 years living with Long Covid and related illnesses, their friends and siblings. Who runs the LCK Discord Server? ​ The LCK Discord Server is moderated by teenagers with Long Covid, and supervised and moderated by adult volunteers. ​ How can I join the server or get more information? ​ Email the Discord team using the button below to find out more. Email Us About Joining Discord Our Discord Policy sets out the guidelines and rules that LCK Discord members must follow/adhere to ensure a positive experience. Discord Policy Michael Rosen Michael Rosen is one of Britain’s best-loved writers and performance poets for children and adults and has personally been affected by Long Covid. He is our patron, which means he supports our charity. ​ "Long Covid exists. Some people are lucky: they got Covid or they will get Covid and there are no long-term effects. For others, it can be mild, quite serious or very serious. It can be not very long, quite long, very long or forever. I’m someone who has two effects which are forever:" Listen to Michael read from his book about his recovery. With the support of those around him, and his trusty walking stick, Sticky McStickstick, Michael Rosen Learns to walk again. "There are people who want to help. “What is the bravest thing you’ve ever said” asked the boy, “Help” said the horse.” Charlie Mackesy " New information comes out all the time. We share it via Padlet. Think of Padlet a bit like an online scrapbook of useful links about kids, Long Covid, health and wellbeing. You can sign up for free HERE. Loads More Info, Videos, Help & Support Padlet Read Kids Case Studies Feedback Form - Have Your Say About LCK Watch FYI Sky Kids Investigate Long Covid In Kids Watch FYI Interview Kids about our Trip to 10 Downing Street Are PIMS-TS and MIS-C the same thing? Yes. In the UK, PIMS-TS stands for Paediatric Inflammatory Multisystem Syndrome, temporally associated with SARS-CoV-2. It is often shortened to PIMS. In the US and internationally it is referred to as Multisystem Inflammatory Syndrome in Children (MIS-C). PIMS-TS is a treatable condition requiring prompt medical treatment. More information from the Evelina Children's Hospital for parents More information from the Evelina Children's Hospital for clinicians More information from the CDC for parents More information from the CDC for clinicians What is PIMS-TS? PIMS-TS is a new systemic inflammatory disease that mainly affects children and young people. The syndrome is caused by a SARS-CoV-2 infection leading to inflammation throughout the body. Inflammation is a normal response from the body’s immune system to fight infection. However, sometimes the immune system can go into overdrive. In PIMS the inflammation is excessive and damaging to the body. For a disease to be classed as rare it affects less than 1 in 2000. Since March 2020 there have been almost 3000 cases of PIMS-TS in the UK alone. PIMS-TS is a treatable condition requiring prompt medical treatment. More information from the Evelina Children's Hospital for parents More information from the Evelina Children's Hospital for clinicians More information from the CDC for parents More information from the CDC for clinicians What are the symptoms of PIMS-TS? All children with PIMS-TS will have a fever >38 degrees C which persists for 24 hours or longer and may not reduce with over-the-counter medications. There is a wide range of other symptoms that children might have, including: Rash Tiredness, sleepiness or fatigue Muscle pain Tummy pain or cramps Red and cracked lips, often swollen Strawberry tongue Swollen fingers, toes or hands and feet, often red Cold hands and feet Peeling skin on hands and feet Headache Red bloodshot eyes Muscle aches and pains Diarrhoea and vomiting Racing heart Dizziness Swollen neck glands Unexplained irritability PIMS-TS is commonly misdiagnosed because: 1. It is a new syndrome 2. It is not commonly seen by doctors 3. Because symptoms are similar to other childhood conditions. 4. Children who experience PIMS-TS may have had an asymptomatic infection 5. Children may not have been previously unwell with COVID-19 6. Children can seem to recover from the acute infection and then develop PIMS-TS 7. The symptoms of PIMS-TS generally don’t appear until 4-6 weeks after SARS-CoV-2 infection. Because PIMS tends to develop after the infectious stage, a PCR test is unlikely to be positive for SARS-CoV-2 at this time. Tell your medical professional if your child has had a positive COVID-19 test or is likely to have been exposed to Covid-19. As with Long Covid, a positive COVID-19 test is not essential for diagnosis. However, knowledge of exposure to Covid-19 supports the diagnosis. We don’t yet know enough about how frequently children who get PIM-TS go on to experience Long Covid. Long Covid Kids have been highlighting in official meetings that non-hospitalised presentations consistent with PIMS have been seen in our support services since 2020. PIMS-TS is a treatable condition requiring prompt medical treatment. More information from the Evelina Children's Hospital for parents More information from the Evelina Children's Hospital for clinicians More information from the CDC for parents More information from the CDC for clinicians What should I do if my child is unwell with the symptoms of PIMS-TS? PIMS-TS is a treatable condition requiring prompt medical treatment. If you think that your child may have PIMS-TS or you are concerned, call your GP or NHS 111 (UK) immediately. If your child develops chest pain, call Emergency Services on 999 (UK) Whilst most children won’t be seriously unwell with SARS-CoV-2 infection, some children may develop PIMS-TS. The most important thing to remember is that any child who is seriously unwell needs to be treated quickly – whatever the illness. There aren't any specific tests for PIMS. Doctors will consider the information available and rule out other more common conditions that cause similar symptoms – including Kawasaki Disease, Sepsis and Toxic Shock Syndrome. Finally, the doctor will be able to work out what treatment is best for your child. If your child is not diagnosed with PIMS and continues to have symptoms consistent with PIMS please get a second opinion. More information from the Evelina Children's Hospital for parents More information from the Evelina Children's Hospital for clinicians More information from the CDC for parents More information from the CDC for clinicians Are Black or Asian children more likely to be affected? Children from all ethnic minority backgrounds are reported to be affected by PIMS. There have been more children affected by PIMS who are from Black and Asian backgrounds, but it is not yet clear why. More information from the Evelina Children's Hospital for parents More information from the Evelina Children's Hospital for clinicians More information from the CDC for parents More information from the CDC for clinicians What if my child has not had COVID-19? Children can experience asymptomatic illness with COVID-19. This means a child may have had COVID-19 without showing any symptoms. Seek medical advice if your child has the symptoms of PIMS even if you don't think they have previously had COVID-19. The doctors will rule out other more common conditions that cause similar symptoms – this includes things like Kawasaki Disease, Sepsis and Toxic Shock Syndrome. More information from the Evelina Children's Hospital for parents More information from the Evelina Children's Hospital for clinicians More information from the CDC for parents More information from the CDC for clinicians How is PIMS diagnosed and treated? Doctors check how well various organs are working and perform blood tests to look at the levels of inflammation in the body. These results together with symptoms guide the doctors to a diagnosis of PIMS. PIMS can be treated with a combination of medicines to reduce inflammation in the body and temporarily “switch off” the hyperactive immune system • Intravenous immunoglobulin (IVIG). • Corticosteroids • Anti-clotting medicines Aspirin and Dalteparin /Clexane) • Biologic medicines (Anakinra and Tocilizumab) We don’t yet know enough about how frequently children who get PIM-TS go on to experience Long Covid. Long Covid Kids have been highlighting in official meetings that non-hospitalised presentations consistent with PIMS have been seen in their support services since 2020. Treatment must be prescribed by a doctor. More information from the Evelina Children's Hospital for parents More information from the Evelina Children's Hospital for clinicians More information from the CDC for parents More information from the CDC for clinicians Are children hospitalised with PIMS? For a disease to be classed as rare it affects less than 1 in 2000. Since March 2020 there have been almost 3000 cases of PIMS-TS in the UK alone. Find more information in the Long Covid Kids Child Specific COVID-19 Infection Analysis Blog Updated March 2021 More information from the Evelina Children's Hospital for parents More information from the Evelina Children's Hospital for clinicians More information from the CDC for parents More information from the CDC for clinicians Do children die from PIMS? Until December 2021 we were unable to find any public data. In December 2021, 1 child PIMS-TS death was reported. Updated Feb 2022 What follow up care should be offered to a child recovering from PIMS? According to the American Academy of Paediatrics (AAPS) children diagnosed with PIMS should receive; Outpatient paediatric cardiology follow-up starting 1 to 2 weeks after discharge from the hospital. Timing should be determined in consultation with a pediatric cardiologist Children with a myocardial injury must have cardiology directed restriction and/or release for activities. Children who receive steroid therapy or treatment with biologics should receive follow-ups with the paediatric rheumatologist after discharge. Primary care follow-up is recommended for all patients. Children and young people usually recover well from PIMS. Some children and young people may develop Long Covid. Should patients with a history of PIMS receive the COVID-19 vaccine? According to the AAP in the USA children with a history of PIMS / MISC should consider delaying vaccination until after they have recovered from illness (including a return to normal cardiac function) and for at least 90 days following their diagnosis of PIMS /MIS-C. Currently, there are limited data about the safety and efficacy of the COVID-19 vaccine in children with a history of PIMS / MISC. It is recommended that paediatricians and families should participate in shared decision making and consider the risks and benefits of COVID-19 vaccination for each patient. The CDC offers additional guidance. Children who have received monoclonal antibodies or convalescent plasma as part of their treatment should wait at least 90 days before receiving the COVID-19 vaccine. What is Long Covid? Long Covid is the term given to the ongoing signs and symptoms caused by SARS-CoV-2 infection. It is generally used to indicate symptoms and clinical signs that remain unresolved for four weeks or longer. Symptoms of Long Covid can also appear some time after an asymptomatic infection. Long Covid was coined by patients who challenged the early COVID-19 guidelines that stated people recovered from mild cases within two weeks. It is called other terms around the world such as Post-COVID-19, Post Covid Condition, and Post-Acute Sequelae of COVID-19 (PASC). Long Covid was first recognised by patients at the beginning of the pandemic when they noticed that symptoms such as those of pneumonia, chilblain like sores and many others were not resolving with time. This history has been peer-reviewed and published Research conducted by both patients and clinical scientists has since proven that the prolonged signs and symptoms of SARS-CoV-2 infection can include damage and dysfunction to all body systems and organs. Symptoms range from chronic loss of smell and fluctuating rashes to neurological and neuropsychiatric symptoms. Some children living with Long Covid have also eventually received a new diagnosis of conditions such as Paediatric Acute-Onset Neuropsychiatric Syndrome (PANs), narcolepsy and organ damage. A booklet published by the National Institute of Health and Care Excellence (NICE), Scottish Intercollegiate Guidelines Network (SIGN) and Royal college of General Practitioners may help explain more. There is no specific test or biomarker for Long Covid and diagnosis is generally by exclusion of other illnesses and syndromes. Some specific tests like a SPECT scan, however, can reveal covid related damage, such as damage to the small vessels in the lung. Many people living with the disease were previously fit and healthy. Scientists are currently working hard to discover biomarkers for Long Covid and there are a number of promising studies nearing completion. NICE produced a rapid guideline on the management of Long Covid in November 2021. They described Long Covid as the presence of signs and symptoms that develop during or following an infection consistent with COVID-19 which continue for 12-weeks or more and are not explained by an alternative diagnosis. This includes both ongoing symptomatic COVID-19 (from 4 to 12 weeks) and long term consequences of COVID-19 (12-weeks or more). Long Covid Kids is referenced as a resource in this document. See Long Covid Physio for more information. How much do we understand about Long Covid? The National Institute for Health Research (NIHR) Second Themed Review on Long Covid stated there may be grounds to understand Long Covid as up to 4 syndromes with different underlying causes and treatment needs. These could include: Long Term Organ Damage Post Viral Syndrome Post Intensive Care Unit (ICU) Syndrome Potentially an entirely novel syndrome separate from the others that could more specifically and uniquely be identified as "Long Covid". It is important to note that these long-term effects on health may coexist in the same person. A note on Post ICU syndrome: Post ICU syndrome is a well known phenomenon in medicine and points to the long-term impact of the intensive care experience on a patient. Doctors and researchers must distinguish the effects of Post ICU syndrome from the damage caused directly by Covid. They both can persist even after hospital discharge. Most children do not need ICU treatment for Covid and related conditions, but this might happen in some cases, for example, with PIMS/ MIS-C. These syndromes are consistent with the experiences shared in Long Covid Kids Support Services. It's going to take years to understand the full impact of SARS-CoV-2 but there are many studies underway seeking to understand and track Long Covid in the UK and globally. Long Covid Kids are proud to be involved in coproducing research and representing lived experiences. Long Covid Kids and others who are speaking up for children are also working hard to ensure transparency of data. As it stands the prevalence of Long Covid is not counted in UK statistics nor do we know the outcome of the child Covid-19 hospital admissions each month. Long term friend to Long Covid Kids, Dr Elaine Maxwell, has recently called for a National Sentinel Audit of Long Covid to obtain standardised data. We do however, have the benefit of our world renowned Office for National Statistics estimates and hope that this vital reporting service will continue. Who can get Long Covid? Anyone, of any age can get Long Covid regardless of the severity of COVID-19 infection. Asymptomatic infection can lead to Long Covid Mild infection can lead to Long Covid Severe infection can lead to Long Covid Long Covid is more often found in non-hospitalised people. Are some people more 'at risk' of getting Long Covid? We don't yet know which children will develop Long Covid. However, early data indicates that those who fall into the following groups appear to have increased risk factors; Female Being young, fit, and healthy Atopy - eczema, asthma, hay fever. Allergy to animals / cats Previous Post Viral Fatigue Ehlers-Danlos syndromes Fibromyalgia Irritable bowel syndrome We need more research to answer this question. Most people recover well from Sars-CoV-2 infection. Anyone who gets COVID-19 may develop symptoms of Long Covid. When do the symptoms of Long Covid start? New and ongoing symptoms lasting more than 4 weeks after COVID-19 infection could be Long Covid. Long Covid most often occurs at around 4-6 weeks after initial COVID-19 infection but can immediately follow the acute phase of COVID-19 infection, or develop at a later date too. It is not uncommon for children to have a gap between COVID-19 infection and Long Covid. Due to the delay in onset of the symptoms of Long Covid we recommend giving children time to convalesce after COVID-19 infection and be cautious about rushing back to activities, including education. It is well documented by people with lived experience, and from other post-viral conditions, that activity can exacerbate symptoms significantly. It is wise to take a cautious approach. For more guidance on recovery please see our support resources developed by people living with Long Covid for families. Cautious Tortoise - #LessHareMoreTortoise Pacing Penguins - #PacingPenguins Tipis for Teachers - #Tips4Teachers How common is Long Covid in children? The NIHR funded paediatric study into Long Covid is called the Clock Study. Their initial findings published in August 2021 showed that 14% of children can go on to develop Long Covid. This means about 2-4 children in each classroom could statistically develop Long Covid. How much impact can Long Covid have on daily life? Long Covid can significantly impact the daily life of children and young people. At the start of 2021 LCK conducted a study of our members which is published as a pre-print. This bar chart shows the effect of infection on children as reported by their families. Some children have one or two symptoms that can impact their daily life occasionally. Some children are living with chronic and disabling symptoms that significantly impact their daily life a lot. Some children have life-altering symptoms that significantly impact their daily life a lot. This bar chart shows some of the specific ways that families reported their children were affected. Physical Activity "Overall, we found that most children had worse activity levels than before infection, since, at the time of the survey, 21.2% were currently unable to enjoy any activity and 30.2% enjoyed the occasional activity but usually had an increase of symptoms after" Mental Health "Parents reported a wide range of neurocognitive symptoms, including lack of concentration, difficulty processing/remembering information or understanding instruction, short term memory issues and struggles to find the right words" Our study is representative of the experiences of children living with Long Covid and evidences the need for further research into the impact of COVID-19 on children. Does my child need to have a confirmed positve COVID-19 or antibody test to receive a diagnosis of Long Covid? No a doctor can make a clinical diagnosis without evidence of a confirmed COVID-19 test. WHO Clinical Case Definition A negative antibody test should not be used to exclude Long Covid as a diagnosis. Research shows that 36% of people living with Long Covid don't seroconvert and women are 4x more likely to seroconvert. This means people living with Long Covid may not develop antibodies. When can my child receive support for their symptoms? In the UK any child that has symptoms of COVID-19 for more than 4 weeks is eligible for a referral to a NHS Long Covid Hub. To obtain an appointment a GP must refer children to the local paediatric team. If the local team is unable to offer support children can be referred to the nearest Long Covid Hub. You do not have to live in the same area as the hub to receive a referral. Find a hub. ​ How long will it take for my child to get better? We don't know how long it will take for each child to get better from Long Covid. Reports of experiences from families vary. Some studies report that children get better between 3 - 6 months. ​ Many children in our support group have been ill since March 2020 and continue to experience relapsing and remitting symptoms that significantly impact dailly life. This means their symptoms can come and go, and can mild or severe. Some children have been ill since March and report to feel '"85% recovered" if they follow their individualised health regimes, including Pacing. See child specific guidance in Pacing Penguins. ​ It is not uncommon to have a period of apparent recovery and then develop symptoms again 6 months later. Some families report new symptoms over a year after infection. It is useful to remember that recovery isn't linear. This means that the path to recovery isn't a straight line. For most people it is very wiggly. Symptoms can increase and decrease in serverity. This means symptoms may come and go and they may sometimes be better, and sometimes be worse. What are the symptoms of acute COVID-19 infection in a child or teenager? Like adults, children can have an asymptomatic (displaying no symptoms), or symptomatic acute COVID-19 infection. A comprehensive list of COVID-19 symptoms can be found on the CDC website. The NHS updated its symptoms list in April 2022 Long Covid Kids have been calling for an improved COVID-19 symptoms list since, winter 2020, from the NHS and Government websites because the ‘classic’ three symptoms of cough, loss/change of smell/taste, and fever do not appear to pick up early infections in children. A survey of members in our support group showed that children often present with: Rashes Fever Sore Throat Headaches Nausea Emotional Dependency Mood changes Diarrhoea Tummy Pain Cold Like Symptoms Since Omicron children coming through our support services can also report: Pain Bloating Joint Pain We are deeply concerned that free testing has been withdrawn. Accessing ongoing support without a positive test can be more challenging and we advise getting a PCR or LFT test if possible. Please seek medical attention whenever your child is unwell. I think my child or teenager has COVID-19, when should I get a test?" Get a test immediately if you can. The following info was added before free. testing was withdrawn in the UK. We stand by this recommendation but recognise that it may not be possible to get a test. Please BOOK a COVID-19 PCR test immediately if you suspect COVID-19 infection. Any sign of being unwell in a child could potentially be a COVID-19 infection. Please see the FAQ above on symptoms for more information on the typical symptoms children may present with. Children often present with different symptoms to adults, listen to your gut instinct and protect your community. You know your child best. A confirmed positive COVID-19 test will make it easier to access medical support for your child should they go on to develop Long Covid and help to accurately record the number of child COVID-19 cases. For moral, emotional, or practical support please join our support services where you will find a wide range of experiences from families around the world. Does it matter if I don’t get my child tested? In short, Yes. Register any positive result Not only does it make the numbers of child COVID-19 cases appear lower if you don’t test, but parents and carers report it is harder to get ongoing medical support, if needed, without a positive test result. Without a test, you may find it difficult to get the correct diagnosis, and you may get misdiagnosed. The government should use the data to inform their decision-making. My child has passed the isolation stage but still has symptoms, do they still need to isolate?" We are not qualified to advise. When Test and Trace contact you they should advise on the dates for isolation (usually a period of 10 days from symptoms or positive test) and on the circumstances under which your child should remain isolated. If they don’t, do feel free to ask, you can phone 119 if you have any queries. However, many children with Long Covid have had ongoing symptoms for many months (some have been struggling since early 2020) and they are not in isolation and not considered to be infectious. If your child has ongoing symptoms past the initial isolation stage do contact your GP for further advice and guidance. Can my child get COVID-19 again? Can you get COVID-19 more than once? My child has COVID-19, can the rest of the household get reinfected?" Yes, there is growing evidence that anyone can get reinfected with COVID-19, even after vaccination. This is particularly the case as the virus develops new variants. There are multiple reports in our support services of reinfection, with some reports of up to 4 confirmed infections. Some children have antibodies after initial infection, others do not. Further research is required to understand more. Recent research shows that antibodies wane at 6-8 months. Where possible isolate any positive cases away from the rest of the household and particularly those who are clinically vulnerable although we recognise that this is not easy with very young children. Other mitigations you may consider are using masks, improving ventilation in the home by opening windows, hand washing, and wiping down frequent contact surfaces such as light switches, door handles, and the bathroom. Make sure to flush the toilet with the seat down. Updated April 2022 We now have reports that some children who did not develop Long Covid after their 1st COVID-19 infection, have developed Long Covid with a 2nd or 3rd infection. Children who have Long Covid, and are reinfected report a mix of experiences, some experience no change in symptoms, others experience significant relapse. PIMS-TS Please see What is PIMS for more detail. Paediatric inflammatory multisystem syndrome temporally associated with SARS-CoV-2 (PIMS-TS) is also known As Multisystem inflammatory syndrome in children (MIS-C). It is often referred to as PIMS-TS or PIMS for short. PIMS is a new condition triggered by a SARS-CoV-2 infection and isn't common. It can be detected early and treated successfully. All children with PIMS will have a fever, which persists over several days. There is a wide range of other symptoms that children might have too. A few of these include tummy pain, diarrhoea, vomiting, rash, cold hands and feet and red eyes. These symptoms can also be found in other illnesses. The most important thing is to remember that any child who is seriously unwell needs to be treated quickly – whatever the illness. If the child has a temperature of 38⁰ or higher, cold hands and feet and is sleepy, call your GP or 111. If symptoms persist and you have not been able to speak to either a GP or 111, take your child to the nearest A&E. If your child doesn’t have these signs of being seriously unwell but you are still concerned, talk to your GP. My child is experiencing sudden onset of mental ill health symptoms such as Obsessive Compulsive Disorder, Anxiety or Tics or Hallucinations. Is this linked to COVID-19? What is PANS/PANDAS?" Some of these symptoms can be a linked to fever or the post viral condition however this could be a neuropsychiatric condition. PANS and PANDAS are closely associated with infections and viruses. Both the initial onset and subsequent exacerbations are usually incited by a variety of childhood infections. From: PANS PANDAS UK PANS (Paediatric Acute-onset Neuropsychiatric Syndrome) PANS is a neuropsychiatric condition which is triggered by a misdirected immune response which results in an inflammation of a child's brain. ​PANS is a clinical diagnosis and there is no specific test which will prove or disprove the condition. In order for a diagnosis to be made, presentation of the following symptoms must occur: PANS Diagnostic Criteria ​An abrupt, acute, dramatic onset (usually within 24-48 hours) of obsessive compulsive disorder (OCD)* or severely restricted food intake** along with two or more of the following symptoms which are not better explained by a known neurologic or medical disorder. ​Anxiety (heightened anxiety, separation anxiety, irrational fears, panic episodes) Tics Emotional lability and/or Depression Irritability, Aggression, and/or Severely Oppositional Behaviours Behavioural (Developmental) Regression (increase in temper tantrums, loss of age-appropriate language, clingy behaviour not related to anxiety). Sudden Deterioration in School Performance (due to difficulties with memory, concentration, hyperactivity, impulsivity, new deficits of visuospatial skills) Motor or Sensory Abnormalities (dysgraphia, clumsiness, tics, new sensory sensitivities to light, noise, smell, taste or texture). Insomnia and/or Sleep disturbances Enuresis and/or Urinary frequency Whilst not part of the diagnostic criteria, in approximately 25% of cases there have been reports of Psychosis and/or Hallucinations PANDAS (Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) ​PANDAS is a subset of PANS. Similarly, it is a neuropsychiatric condition which is triggered by a misdirected immune response to a Streptococcal infection which results in an inflammation of a child's brain. PANDAS Diagnostic Criteria ​Usually starting with an acute onset of obsessive compulsive disorder and/or tics, particularly multiple, complex or unusual tics. PANDAS symptoms can then appear to wax and wane with the child experiencing flares periodically, following illness or periods of stress. The child is usually between the ages of 3 and puberty when first symptoms occur and usually appear following a streptococcal infection such as Sinusitus, Ear infections or Scarlet Fever. In some cases children can carry the streptococcus bacteria without showing signs of illness. Whilst it is not a diagnostic requirement, in addition to OCD* and/or tics, children may also experience co-morbid symptoms similar to those seen in PANS.​ * OCD may include any of the following: Contamination obsessions and compulsions Obsessions that harm will come to others and/or related compulsions Sexual or religious obsessions Repeating compulsions Symmetry and exactness obsessions Ordering/arranging compulsions Counting compulsions Checking obsessions or compulsions Excessive reassurance seeking Need to touch, tap or rub Intrusive images, words, music or nonsense sounds Ritualised eating behaviours​ ** Severely Restricted food intake may be related to contamination fears, obsessional fears of choking, or other obsessional fears including a new obsession with body image or weight. ​ Make an appointment with your GP to discuss your concerns. Your GP may not be aware of PANS/PANDAS so do direct them to https://www.panspandasuk.org/for-medical-professionals and work together to determine what treatment to implement. Where can I find out more about COVID-19 Vaccines for children and young people? Please see The Royal College of Paediatrics and Child Health for information on vaccines. Information about the vaccine, its safety and side effects has been published by the UK Health Security Agency. Vaccination is not thought to eliminate the risk of Long Covid but early evidence does show that it may reduce risk. How can I reduce risk? Avoiding infection is the only known way to avoid Long Covid. LCK recommend following the advice of the World Health Organisation who have a specific page for young people. Layers of mitigation can help reduce risk of infection. Distancing Mask Wearing Hygiene Ventilation & Fresh Air Vaccinations Isolate when ill Videos Understand more about transmission. Find a mask that fits your face. Schools Support your school to encourage any children with any symptoms to stay home. This simple practice can help schools stay open and offer in person learning. Schools can offer hybrid learning options to maintain access to education for children and young people well enough to continue education at home. What support services do LCK offer? Long Covid Kids offer three online services. Site membership, registration and consent are required. We take safeguarding seriously. LCK Connected Guided Zoom Hang Outs are hosted by our team of volunteers for children and teenagers from 6 - 17 years, and the parents and caregivers who care for them. Participants are required to become a member of our website and compete our registration form before using this service. 6 - 12 Years Teens Parents & Caregivers Discord 13+ Facebook Groups Our moderated Facebook groups offer peer to peer support and signposting for families of children & young people living with Long Covid. A Facebook account & membership consent is required. Who are LCK support services for? Long Covid Kids support services are for families, children and young people living with Long Covid from around the world. Parents and Caregivers LCK Connected ChatBox Facebook Children and Young People ages 6 - 17 LCK Connected 6+ Chat Box 8+ Under 8's We are fundraising to be able to extend our services for under 8's. We are inclusive We believe in mutual respect, dignity, fairness, care and equality. We welcome and support all children, young people, their families and caregivers, from every community, without exception.We recognise the challenges families can face in obtaining a diagnosis and welcome members who have had suspected or confirmed COVID-19 infection living with ongoing symptoms. Register to join How do I register for the support services? How to Register Become a member of the WEBSITE using your name and email address. You can do this HERE. Check your inbox / spam folder for an email. Click the button in the email to complete the registration and consent form. Complete the form in full. Receive your 'Confirmation' email and login to access our support services. Login using the LOGIN button at the top of the website. Once you have logged in you can visit the ChatBox Members Page to view the forum and start chatting. Visit. your website profile to add your photo, edit your notification preference and use our support services any time. LCK take the safeguarding of children and young people seriously and require each person using our services to complete the registration process. This helps us to adhere to our Safeguarding Policy. Troubleshooting Please check you are logged into the website. To check that you are logged check you can see your name / profile showing in the top bar of the website. When you are logged in you can edit your notification preferences. There are other FAQs that you can read that might help too. For ongoing troubleshooting issues please contact supportsevices@longcovidkids.org for support. Are LCK support services free? Yes our services are free. We are a charity and rely on donations. Donations are welcome but not expected. Are there any support services for children under 8 years? We welcome children aged 6 - 7 years in LCK Connected if you feel it is the right space for them. LCK hope to be able to provide additional services for younger children soon. During the trial phase of our support services we identified that younger children need an alternative service to those currently on offer, but that some children age 6-7 years may enjoy LCK Connected. We hope to fundraise to be able to run play therapy sessions for younger children in the future. What safeguarding steps are in place? We take safeguarding seriously. LCK adheres to our safeguarding policy and do our best to screen attendees but parents and caregivers are responsible for the safeguarding of their children and young people under 18 and should remain vigilant. LCK requires a parent or carer present with any child under the age of 16 whilst using our support services. An over view of the steps we take Due diligence in the on boarding of volunteers Website members only Registration & consent of members Manual registration verification by team volunteers Age specific channels Terms Of Use Reminder messages about the rules before posting Ongoing part time moderation Ask our members to report concerns Read our Safeguarding Policy Where can I raise issues or concerns? If you have any ongoing concerns that have not been resolved by a moderator please contact the safeguarding officer. In the first instance; Safeguarding Officer Senior Officer Sarah Priest. spriest@longcovidkids.org Unresolved concerns; Safeguarding Lead LCK CEO Sammie Mcfarland smcfarland@longcovidkids.org Where can I find out more? For general enquires about our support services please email supportservices@longcovidkids.org Read our Safeguarding Policy. Read our Terms and Conditions. I have registered on the website but I keep getting “You don’t have permission to access this page” Once you have registered you will be emailed a form to complete giving further details on how to register. This form needs to be completed before access to the LCK Connected booking area and Chatbox is granted. This email sometimes goes into your spam folder, so check there first. If it isn’t there please email supportservices@longcovidkids.org for assistance. I have completed a form and have only been granted access to one area of the support services website. To allow you the opportunity to post in Chatbox in complete confidence your registration only allows you access to one part of the site. For example if on the registration form you specify the user of the website will be parent and caregiver, you will only be granted access to those areas. To get access for your child they will need to register using a DIFFERENT email specifying the age group they would like access to. Email supportservices@longcovidkids.org for further assistance. I have completed the form and I still cannot access the page Try refreshing your browser and trying again. The page sometimes needs a little patience to load, so do give it a chance. I have registered on the website and have been given access to the wrong area, what can I do? If you have been given access to the incorrect area, please email supportservices@longcovidkids.org with the details of the correct are you would like access to and we will amend it for you. What is Long Covid ? Long Covid is the name for the symptoms that carry on for more than four weeks after someone gets COVID-19. It is a descriptive title given by the people who are living with Long Covid to help explain the difference between initial COVID-19 symptoms and ongoing symptoms. How long does it take to get better from Long Covid? We wish we had the answer to this question, but because Long Covid is so new, we just don’t know yet. We can tell you what we know so far. Many children get better in less than three months Some children take longer to get better. Some children have not recovered yet but have improved. There are also some children who have not seen improvement. So as you can see it is a very tricky question to answer. We have learn't a lot since 2020, and there are lots of ways to reduce symptoms to make them more manageable. Some symptoms can be treated. Your doctor will be able to give you and your family some advice about these. Scientists are working hard to understand Long Covid and to develop treatments which we all hope will make people better. Who gets Long Covid? Both children and grown-ups can experience long-lasting symptoms. Because Long Covid is new, we don’t know why some children experience symptoms that seem to go on and on, and why others don’t. This is one of the things doctors and scientists are working on right now. Who can I talk to? Managing any new situation or change in health can cause worry. It’s okay to cry, feel worried or angry but if these emotions become too difficult to deal with, know that there are people who will want to help you manage these feelings. Share how you feel with a trusted adult. There are lots of people who can offer support. Think about who you can talk to at school or at home. You can talk to one of the health care professionals involved in your care. There are many organisations like ChildLine listed at the bottom of his page. It can also help to talk to people who are a similar age to you who have had a similar experience to you. Lots of children have told our team that they enjoy the free online LCK Connected Zoom HangOut sessions we offer, and they like chatting with the friends they make in ChatBox our online forum. You are not alone. There are people who want to help, including us. “What is the bravest thing you’ve ever said” asked the boy, “Help” said the horse.” Charlie Mackesy Kooth Available as an app or on a desktop, Kooth is for CPY age 10-25 and is free, safe, anonymous support accredited by BACP. The Mix 0808 808 4494 (3pm-12am daily) Various avenues of support such as live chat, discussion boards and helpline for CYP age 10-25. Young Minds Textline. Text YM to 85258 (free from EE, O2, Vodafone, 3, Virgin Mobile, BT Mobile, GiffGaff, Tesco Mobile and Telecom Plus). Provides free, 24/7 text support for young people across the UK experiencing a mental health crisis. All texts are answered by trained volunteers, with support from experienced clinical supervisors. Young Minds Website This is a great website that a child or young person can access with excellent resources. Parents can also access it for ways to help support their children. The Emotional Wellbeing and Mental Health Service (EWMHS) Provides advice and support to children, young people and families who are in need of support with their emotional wellbeing or mental health difficulties. Can I talk to other kids with Long Covid? Yes. Lots of children have told our team that they enjoy the free online Zoom HangOut sessions we offer, and they like chatting with the friends they make in ChatBox. ChatBox is an online space for kids living with Long Covid. Kids between the ages of 8-17 years can chat online, be kids, and support each other. There is a different space for each age group to connect with other kids who are in the same age group and who maybe going through a similar experience. It is a great way to make new friends who ‘get it’. If you are under 16 you will need to ask your parent or caregiver to complete the registration form, if you are over 16 you can complete this for yourself. ChatBox Online Forum Online chat forum for kids living with Long Covid. Separate channels for ages; • Age 8-11 years • Age 12-14 years • Age 15+ years • Parents & caregivers ChatBox members can choose to engage in specific topics and discussions that interest them. Connect with other kids who are the same age, or share similar interests and form supportive friendships. ChatBox can be used in between LCK Connected sessions to nurture relationships and gain support. Find out more LCK Connected LCK Connected offers weekly Zoom HangOuts led by our experienced volunteer team and provides a welcoming session for children from ages 6-17 years, parents and caregivers. Members can actively participate and chat with cameras on, others pop in to say ‘Hello’ at the start and then switch their camera off, hang out, chill and listen. Members often choose to continue discussions, friendships and peer-to-peer support via ChatBox Find out more What if nobody believes me ? Long Covid is new, and everybody is learning. Try to talk to your family or trusted adult about how you are feeling. Try to explain how your symptoms affect you. You may find it helpful to show them the information on this website to help them understand more about Long Covid. Consider reaching out to a trusted adult from your extended family (e.g Aunt, Grandparent) or somebody at school. They might be able to help speak to your family for you or with you. Depending on your age you have different rights to seek support without consent and whether or not this support has to be kept private or confidential. You could phone your GP to seek support and they will assess whether you have the capacity to do this. Can I consent to my own treatment? People aged 16 or over are entitled to consent to their own treatment. This can only be overruled in exceptional circumstances. If you are under the age of 16 you can consent to your own treatment if you’re believed to have enough intelligence, and competence to fully understand what’s involved in your treatment. This is known as being Gillick competent. Can I refuse to have treatment? If you refuse treatment, and that refusal could cause you serious harm, your decision can be overruled by the Court of Protection. This is the legal body that oversees the operation of the Mental Capacity Act (2005). If you have refused treatment your parents may consent for you, but it’s usually thought best to go through the courts in this situation. Do I have a right to keep my treatment confidential? Yes. Article 16 of the UN Convention states that children have a right to privacy. This means that you are entitled to respect for privacy and confidentiality, for example, in getting advice and counselling on health matters, depending on your age and understanding. Breaking confidentiality is done only when it is in the best interest of you or the public, required by law or if you give your consent.

Galleria dei sintomi di Covid Kids lunga July 30, 2021 ​ Delta poses 'severe' risk to mothers-to-be: Covid variant could be bigger danger for pregnant women, scientists warn The Delta variant may pose a greater risk to pregnant women, scientists have warned, as they called on expectant mothers to get vaccinated. More than 99 per cent of pregnant women hospitalised with Covid are unvaccinated and one in ten end up in intensive care, a study found. Researchers from Oxford University described their findings as ‘very concerning’. Button June 30, 2021 ​ Gedling woman speaks out over deciding to get Covid vaccine while pregnant “Due to my job, I had personally seen women severely unwell with Covid-19 with caesarean section kits next to their beds in case the worst happened to them. This was sobering enough for me, alongside knowing that vaccines are given routinely in pregnancy. There has been more than six months of data about the vaccines with no major risks outlined and there have been more than 100,000 women in America who have had the vaccines safely in pregnancy.” Button June 24, 2021 ​ "It's very distressing to watch someone expecting with Covid": Joy and relief as pregnant women receive their vaccines "We know from the national data that of the women who were admitted to hospital with Covid, one in 10 ended up in critical care. The babies were two-to-three times more likely to be delivered prematurely. Sadly there is an increased risk of stillbirth. That risk is small but it's probably doubled if you get Covid. And out of the women admitted to hospital with Covid, one in 150 died. That's what really worries us." Button June 23, 2021 ​ Why I got the Covid vaccine during pregnancy "Prior to Covid and pregnancy, I’d been backpacking around the world and received many of the vaccines currently available from yellow fever, encephalitis, hepatitis, meningitis and everything else I could get. Now, I wish that same freedom for my unborn child... I like to think I’ve given my child the gift of health and to help them feel safe in a complex world, which is the only thing that any parent cares about, once everything else is stripped away." Button June 17, 2021 ​ Preliminary Findings of mRNA Covid-19 Vaccine Safety in Pregnant Persons "Preliminary findings did not show obvious safety signals among pregnant persons who received mRNA Covid-19 vaccines. However, more longitudinal follow-up, including follow-up of large numbers of women vaccinated earlier in pregnancy, is necessary to inform maternal, pregnancy, and infant outcomes." Button May 24, 2021 ​ Why is Covid-19 killing so many pregnant women in India? "Pregnant women, who have weaker immune systems, have been developing widespread scarring of the lungs after getting infected by the virus. “Their lungs looked white as bone on X-rays,” the doctor said. “Their air sacs filled with fluid that had leaked from blood vessels into the lungs.” Button May 13, 2021 ​ Coronavirus Vaccines Protect Pregnant Women, Another Study Suggests "The shots may also have benefits for infants and do not seem to damage the placenta, according to the latest research." Button April 27, 2021 ​ COVID vaccines don’t harm ovaries and neither does virus, Jerusalem doctors find "Taking a coronavirus vaccine won’t harm ovary function, and neither will catching COVID-19, Israeli researchers have concluded in a study that might reassure vaccine hesitaters and recovered patients alike. They studied the ovaries of women undergoing IVF, and saw that there was no difference in function between the women based on whether they were vaccinated or unvaccinated, or on whether they had or hadn’t been infected." Button April 16, 2021 ​ Pregnant women in UK told to have Pfizer or Moderna vaccine "Pregnant women in Britain should get a COVID-19 vaccine made by Pfizer (PFE.N) or Moderna (MRNA.O) because there is more real-world data to show they are safe, the British public body that advises on vaccinations said on Friday. The Joint Committee on Vaccination and Immunisation (JCVI) said around 90,000 pregnant women had been vaccinated in the United States, mainly with the two American vaccines, without any safety concerns being raised." Button February 27, 2021 ​ Fetus infected with COVID-19 dies in womb, in 2nd such case in Israel "An Israeli hospital said on Saturday that a fetus stillborn from a woman infected with the coronavirus was also found to be carrying the virus. It was the second such reported instance in Israel." Button February 16, 2021 ​ Hospital says ‘high probability’ fetus died of virus, in 1st such case in Israel "An Israeli hospital said on Tuesday that a fetus stillborn from a woman infected with the coronavirus was also found to be carrying the virus, having been infected via the placenta. It was the first such reported instance in Israel." Button September 15, 2020 ​ Stillbirth rate rises dramatically during pandemic "A slew of studies from around the world has reported a disturbing trend: since the coronavirus pandemic started, there has been a significant rise in the proportion of pregnancies ending in stillbirths, in which babies die in the womb. Researchers say that in some countries, pregnant women have received less care than they need because of lockdown restrictions and disruptions to health care. As a result, complications that can lead to stillbirths were probably missed, they say." Button May 9, 2020 ​ Severe maternal morbidity and mortality associated with COVID-19: The risk should not be downplayed "Maternal deaths due to COVID-19 are happening not only in low-income countries with restricted resources and poorer healthcare systems, but also in highly developed countries with excellent resources and healthcare facilities and traditionally very low maternal mortality ratios. Furthermore, it is very likely that maternal deaths are under-reported." Button July 1, 2021 ​ Short-term outcome of pregnant women vaccinated by BNT162b2 mRNA COVID-19 vaccine "As shown by the adverse effect profile and short-term obstetric and neonatal outcomes, no safety signals appeared among pregnant women who were vaccinated by BNT162b2vaccine at all stages of pregnancy. The vaccine is effective in generating humoral immune response in pregnant women, although IgG levels were lower than observed in non-pregnant women." Button June 27, 2021 ​ Pregnant women can get vaccinated with Sputnik V if benefits outweigh the risks "On Friday, Russian Health Minister Mikhail Murashko informed that taking into account the positive results of the pre-clinical safety trials of the vaccine and the accumulated data on its safety and efficiency during the post-registration trials, experts have decided to allow the use of Sputnik V among pregnant women. The minister explained that this allows pregnant women who have a high risk of developing severe symptoms of the disease to get vaccinated." Button June 23, 2021 ​ NIH begins study of COVID-19 vaccination during pregnancy and postpartum "A new observational study has begun to evaluate the immune responses generated by COVID-19 vaccines administered to pregnant or postpartum people. Researchers will measure the development and durability of antibodies against SARS-CoV-2, the virus that causes COVID-19, in people vaccinated during pregnancy or the first two postpartum months." Button June 22, 2021 ​ Pregnant German women seek vaccination "Despite pregnant women being more likely to die from COVID-19, there is currently no nationwide recommendation to vaccinate them in Germany. But the state of Saxony has pushed ahead on its own. Now, many women are traveling there to get their shot." Button June 9, 2021 ​ Research now backs routinely offering pregnant women the mRNA COVID-19 vaccine "New Zealand and Australia will now routinely offer the Pfizer COVID-19 vaccine to women at any stage of pregnancy, following an update of vaccination advice. This comes as research suggests the risk of severe outcomes from infection is significantly higher for pregnant women compared to the general population. At the same time, data from pregnant women who have already been vaccinated around the world have shown no safety concerns associated with COVID-19 vaccines." Button May 19, 2021 ​ Maternal and perinatal outcomes of pregnant women with SARS-CoV-2 infection at the time of birth in England: national cohort study "SARS-CoV-2 infection at the time of birth is associated with higher rates of fetal death, preterm birth, preeclampsia and emergency Cesarean delivery. There were no additional adverse neonatal outcomes, other than those related to preterm delivery. Pregnant women should be counseled regarding risks of SARS-COV-2 infection and should be considered a priority for vaccination." Button May 13, 2021 ​ Immunogenicity of COVID-19 mRNA Vaccines in Pregnant and Lactating Women "In this exploratory analysis of a convenience sample, receipt of a COVID-19 mRNA vaccine was immunogenic in pregnant women, and vaccine-elicited antibodies were transported to infant cord blood and breast milk. Pregnant and nonpregnant women who were vaccinated developed cross-reactive antibody responses and T-cell responses against SARS-CoV-2 variants of concern." Button April 22, 2021 ​ Clear link emerges between COVID-19 and pregnancy complications "Those with COVID-19 had a 76% greater chance of pregnancy-induced high blood pressure, known as preeclampsia or eclampsia. They were three times as likely to have a severe infection and five times as likely to be admitted to an intensive care unit, Papageorghiou’s team reports today in JAMA Pediatrics. Eleven women with COVID-19 died, compared with just one woman in the uninfected group." Button April 16, 2021 ​ Brazil asks women to delay pregnancy over new coronavirus variant fears "If it’s possible, delay pregnancy a little until a better moment," Health Ministry official Raphael Parente said during a news conference on Friday. He said the recommendation was partly due to the stress on the health system but also due to the more easily transmissible Brazilian variant known as P.1. "The clinical experience of specialists shows that this new variant acts more aggressively in pregnant women," Parente said. Previously, COVID-19 cases during pregnancy were focused on the final trimester and birth, whereas lately there have been more serious cases in the second and occasionally first trimester, he said." Button February 23, 2021 ​ Pregnancy and neonatal outcomes of COVID-19: coreporting of common outcomes from PAN-COVID and AAP-SONPM registries "Preterm delivery affected a higher proportion of women than expected based on historical and contemporaneous national data... Although maternal death was uncommon, the rate was higher than expected based on UK and USA population data, which is likely explained by underascertainment of women affected by milder or asymptomatic infection in pregnancy in the PAN-COVID study, although not in the AAP-SONPM study." Button November 6, 2020 ​ Birth and Infant Outcomes Following Laboratory-Confirmed SARS-CoV-2 Infection in Pregnancy — SET-NET, 16 Jurisdictions, March 29–October 14, 2020 "Among 3,912 infants with known gestational age born to women with SARS-CoV-2 infection, 12.9% were preterm (<37 weeks), higher than a national estimate of 10.2%. Among 610 (21.3%) infants with testing results, 2.6% had positive SARS-CoV-2 results, primarily those born to women with infection at delivery." Button August 4, 2020 ​ Why pregnant women face special risks from COVID-19 "Pregnancy does appear to make women’s bodies more vulnerable to severe COVID-19, the disease caused by SARS-CoV-2. That’s partly because of pregnant women’s uniquely adjusted immune systems, and partly because the coronavirus’ points of attack—the lungs and the cardiovascular system—are already stressed in pregnancy." Button May 9, 2020 ​ Public Health Agency of Sweden's Brief Report: Pregnant and postpartum women with severe acute respiratory syndrome coronavirus 2 infection in intensive care in Sweden "The results indicate that the risk of being admitted to ICU may be higher in pregnant and postpartum women with laboratory-confirmed SARS-CoV-2 in Sweden, compared with non-pregnant women of similar age." Button July 1, 2021 ​ Pregnant women in England denied mental health help because of Covid "Thousands of pregnant women in England were denied vital help for their mental health because of the pandemic, analysis from leading psychiatrists shows. In 2020-21, 47,000 were expected to access perinatal mental health services to help with conditions such as anxiety and depression during or after giving birth, but only 31,261 managed to get help in the most recent data for the 2020 calendar year only, according to analysis from the Royal College of Psychiatrists." Button June 25, 2021 ​ Inflammatory biomarkers in pregnant women with COVID-19: a retrospective cohort study "Our findings are in agreement with the results of previous studies highlighting how COVID-19 patients are characterized by a relevant systemic inflammation, which acts as a driver of morbidity and mortality. Particularly, lymphocytopenia, a high NLR and high values of CRP had all been linked with disease severity or mortality. Our work confirms that these variables show abnormal values also in obstetric patients and mirrors the course of the disease." Button June 23, 2021 ​ COVID vaccines and breastfeeding: what the data say "The vaccines do not pass through breastmilk, but antibodies do — providing hope that breastfed babies might have some level of protection." Button June 18, 2021 ​ COVID-19: Pregnant women and their unborn babies dying in Brazil as deaths set to pass 500k mark "Researchers say the P1 variant has started infecting and killing pregnant women and their unborn children in startling numbers... Currently 42 pregnant women die every week from COVID-19; many more women are being intubated and their premature children delivered by caesarean section without consultation with obstetricians, according to medical researchers at the Brazilian Obstetric Observatory." Button May 27, 2021 ​ Covid-19 Is Killing Hundreds of Pregnant Women and Babies in Brazil "At least 579 babies under the age of 1 have died from Covid-19 in Brazil since the start of the pandemic. Hundreds of babies are being delivered prematurely to save their sick mothers. Others perish in the womb, starved of oxygen as their mothers gasp for air, or contract the disease and die in the first months of life." Button May 17, 2021 ​ First UK COVID-19 vaccine study for pregnant women launches "The first COVID-19 vaccine study in the UK to recruit pregnant women has been launched across eleven National Institute of Health Research sites. The phase 2/3 study aims to further understand the safety, tolerability and immunogenicity of the Pfizer-BioNTech COVID-19 vaccine in healthy pregnant women, with approximately 235 volunteers involved throughout the UK." Button May 11, 2021 ​ Severe Acute Respiratory Syndrome Coronavirus 2 (SARS-CoV-2) Vaccination in Pregnancy "In our cohort of vaccinated pregnant patients, there was no observed increase in the incidence of findings characteristic of SARS-CoV-2 infection in pregnancy and no evidence of vaccine-triggered breakdown in maternal immunologic tolerance of the fetus. Although limited by population differences between vaccinated and unvaccinated patients, these findings add to the growing literature supporting the safety of SARS-CoV-2 vaccination in pregnancy." Button April 22, 2021 ​ Maternal and Neonatal Morbidity and Mortality Among Pregnant Women With and Without COVID-19 Infection "In this multinational cohort study of 2130 pregnant women in 18 countries, women with COVID-19 diagnosis were at increased risk of a composite maternal morbidity and mortality index. Newborns of women with COVID-19 diagnosis had significantly higher severe neonatal morbidity index and severe perinatal morbidity and mortality index compared with newborns of women without COVID-19 diagnosis." Button March 16, 2021 ​ Sisters, aged 23 and 31, die of COVID 10 days apart after giving birth "A 23-year-old woman died Monday due to complications from the coronavirus, three weeks after giving birth and less than two weeks after her sister, 31, died of the same cause after her first baby was born... Army Radio reported Tuesday that a mother had lost her unborn twins due to the coronavirus. She was said to be hospitalized in moderate condition, and had apparently not been vaccinated. The report said 40 pregnant women are currently hospitalized due to complications of the virus, none of whom are vaccinated." Button February 22, 2021 ​ Death of mother, fetus highlights sharp rise in COVID infections among pregnant "According to data published by Israeli television networks, recent months have seen a significant increase in pregnant women infected by the virus, something officials have blamed on the more aggressive UK variant... Channel 13 reported that there are currently 50 pregnant women hospitalized, with 19 in serious condition and 8 in critical condition. None of them have been vaccinated." Button October 7, 2020 ​ COVID-19 Has a Prolonged Effect for Many During Pregnancy "Symptoms for pregnant women with COVID-19 can be prolonged, lasting two months or longer for a quarter of the women who participated in a national study led by UC San Francisco and UCLA." Button July 14, 2020 ​ Transplacental transmission of SARS-CoV-2 infection "The transmission is confirmed by comprehensive virological and pathological investigations. In detail, SARS-CoV-2 causes: (1) maternal viremia, (2) placental infection demonstrated by immunohistochemistry and very high viral load; placental inflammation, as shown by histological examination and immunohistochemistry, and (3) neonatal viremia following placental infection. The neonate is studied clinically, through imaging, and followed up. The neonate presented with neurological manifestations, similar to those described in adult patients.." Button

Recovery Recovering from any post-viral illness can take time. While it is natural to want to 'get back to normal after being unwell, 'pushing through' is ill-advised, and may prolong recovery time in some children. More information can be found in our blog posts 'Cautious Tortoise ' and 'Pacing Penguins '. ​ NHS England Long Covid Hubs On the 15th of June 2021, NHS England announced 15 Long Covid Hubs for children struggling to recover from COVID-19 infection. The hubs are designed to help assess & coordinate care of children and young people. They are not funded to provide treatment. ​ Any child with symptoms lasting longer than 4 weeks can be referred to the local paediatric team by the GP. If the local team are unable to support, they can refer the child to the nearest Long Covid Hub. Scotland, Ireland and Wales do not yet have any Long Covid services. Links & Downloads Supporting Children Living with Long Covid to Manage Their Energy With Pacing Penguins DOWNLOAD Long Covid Recovery for Children DOWNLOAD Back to School - Tips for Teachers DOWNLOAD NHS Paediatric Long Covid Hubs DOWNLOAD Caring for People with Post-COVID Conditions VIEW LINK Long Covid Physio VIEW LINK THIS IS A BRAND NEW PAGE AND CURRENTLY UNDER CONSTRUCTION