Copying Down

पूछे जाने वाले प्रश्न

हमने कुछ अक्सर पूछे जाने वाले प्रश्नों को शामिल किया है जो हमें माता-पिता, स्कूलों और देखभालकर्ताओं के ईमेल द्वारा प्राप्त हुए हैं

हम सभी उत्तरों के लिए दिखावा नहीं करते हैं, लेकिन आशा है कि यह मदद करता है।


What is PIMS?

From: the Royal College of Paediatrics and Child Health (12/11/21) (see this link for more detail) Paediatric Multisystem Inflammatory Syndrome (called PIMS-TS or PIMS for short) is very rare. It occurs in less than 0.5% of children who have (or who have had) COVID-19. Most children with the condition will not be seriously affected but, in a very small number of cases, it can be serious. All children with PIMS will have a fever, which persists over several days. There’s a very wide range of other symptoms that children might have, including: tummy pain, diarrhoea, vomiting, rash, cold hands and feet and red eyes. These symptoms can be found in other illnesses too. While most won’t be seriously unwell, some children may be severely affected by the syndrome. 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 and work together to determine what treatment to implement.


Which children in the UK get a COVID-19 Vaccine?

The following information is from The Royal College of Paediatrics and Child Health While the earlier phases of the vaccination programme prioritised some specific groups of children and young people who were clinically vulnerable i.e. those who are 16 years and over in an at-risk group (as defined by Table 3 of the Green Book), since July, the Joint Committee on Vaccination and Immunisation (JCVI) and the UK Chief Medical Officers (CMOs) have been advising on how the COVID vaccination programme may be applied more broadly to children and young people. We’ve summarised their advice here. The following groups will be offered two doses of the Pfizer BioNTech vaccine: 12-15 year olds who are increased risk of serious COVID-19 disease and hospitalisation in the following groups: those with severe neuro-disabilities those with immunosuppression* those with Down Syndrome those with profound and multiple learning disabilities, severe learning disabilities, or on GP the learning disability register haematological malignancy sickle cell disease type 1 diabetes congenital heart disease other health conditions as described by JCVI. The Green Book has been updated and provides full details on the eligible clinical groups. 12-17 year olds who are household contacts of people of any age who are immunosuppressed Those turning 18 in the next three months Those 12-17 year olds not covered by any of the categories above, and not vaccinated in earlier phases of the programme, will be offered a single dose of the Pfizer BioNTech vaccine. JCVI will provide further advice regarding details of second doses for this group once more data has been analysed. This is expected in the autumn for 16 & 17 year olds and in the spring for 12-15 year olds.

What has JCVI advised for those who are severely immunosuppressed?

JCVI has advised that people aged 12 years and over who were severely immunosuppressed at the time of their first or second dose should be offered a third vaccine dose as part of their primary COVID-19 vaccination schedule. Studies are ongoing to see how effective a third dose is for immunosuppressed people, but it is very unlikely to cause any harm. Therefore, on balance, the JCVI have decided that a third dose can be safely offered as it may increase their protection. The specialist paediatrician involved should advise whether the child or young person meets the eligibility criteria and on the timing of the third dose. This is separate from any potential booster programme which is still being decided by the JCVI.

When will those who are now eligible be able to get their first vaccination?

The four health services across the UK are now developing and rolling out their plans. Different approaches will be taken across the country. The Governments and NHS vaccine programmes should provide clear and consistent information for children and young people, families and clinicians about these next steps. In England further information has been published on Details of the Northern Ireland vaccination programme is available on the nidirect government services website. In Scotland, further information has been provided by NHS Inform, including these details regarding vaccinations for those aged 12-15 years. Further details of the Welsh Government’s vaccination programme is available on the GOV.WALES website.

What other steps can I, or my child’s school take to prevent my child getting COVID-19?

We are aware that the Department for Education removed the need for many mitigations in schools and dropped mandatory mask wearing, bubbles and the need for household members of positive cases to isolate. However some schools have re-introduced some of these measures as cases rise. Secondary school pupils are being advised to Rapid Lateral Flow Test (LFT) twice a week and to stay home and complete a PCR test if they test positive. Children may well feel comfortable to wear masks and should be supported to do so. The government has advised that schools will be provided with CO2 monitors to monitor air quality, and ventilation of classrooms is a key recommendation, although we are aware this may be more difficult in the upcoming winter months. May sure your child has adequate layers of clothing in case windows need to be opened. Outside of school, reducing the amount of and duration of contacts you have with others outside your home and meeting in well ventilated rooms or outdoors is still advised. Support your school to encourage any children with symptoms to stay home and ask about hybrid learning options so that they can still access education if they need to isolate.


What is Long Covid in children and teenagers?

The long-lasting symptoms of COVID-19 are just being documented in children. As yet there isn't an agreed clinical diagnosis (the recent WHO definition of post COVID-19 condition recognises that a separate definition may be applicable for children). Post COVID-19 condition occurs in individuals with a history of probable or confirmed SARS- CoV-2 infection, usually 3 months from the onset of COVID-19 with symptoms that last for at least 2 months and cannot be explained by an alternative diagnosis. Common symptoms include fatigue, shortness of breath, cognitive dysfunction but also others* and generally have an impact on everyday functioning. Symptoms may be new onset following initial recovery from an acute COVID-19 episode or persist from the initial illness. Symptoms may also fluctuate or relapse over time. Long Covid is an umbrella term used by patient advocates to recognise the ongoing clusters of symptoms post infection. The clinical name used by people in healthcare or research may vary.

What are the symptoms of Long Covid in a child or teenager?

Do look at our Symptom Gallery page for an up to date list. Children exhibiting long-lasting symptoms from COVID-19 infection most likely have Long Covid. It does not matter if your child was tested at the time of infection, or if they tested negative, and developed symptoms at a later date, they could still have Long Covid. Research has demonstrated that severity of initial symptoms does not directly equate to Long Covid. Children, teenagers and adults can have asymptomatic or mild initial illness and still go on to experience Long Covid. They can also seemingly recover from the initial illness to begin to show the same or new symptoms weeks later. Is your child experiencing symptoms affecting any part or parts of their body since COVID-19 infection or exposure? Children with new clusters/constellations / or single symptoms most likely have Long Covid. Is your child having repeat episodes of symptoms that come and go? Relapsing and remitting symptoms are a common occurrence in children with Long Covid. Has your child experienced a flare-up of 'old pre-COVID-19 symptoms' after a potential exposure to Coronavirus? For example; Chicken Pox. Latent viruses seem to be triggered by COVID-19 infection and this could be Long Covid. Has your child been to school? Or been in contact with other people, at school, in the community or your family unit? Children can be asymptomatic for Coronavirus and still experience Long Covid. Any child or adult at school could have been asymptomatic and transmitted COVID-19 to your child. Have you noticed that your child's behaviour has changed? Behaviour changes are seen in children with Long Covid, often before symptoms appear, and can occur without any physical symptoms, although this is less common. Can you recall your child complaining of tummy ache recently? Younger children often describe a general feeling of unwellness as a tummy ache. A tummy ache could be Long Covid. Your child may not have the vocabulary to explain their symptoms. Have other members of your family/bubble tested positive? Think Long Covid for ongoing symptoms. Resources Any symptom of being unwell could be Long Covid. Please see our Resources for more information. If you have concerns about the health and wellbeing of your child, please seek medical advice as many times as you need to. Our guidance is here to support and is not a substitute for a professional diagnosis. Listen to your gut instinct and be a strong advocate for your child. You know your child best. If you need support, please join our support group on Facebook.

What do I do when other people are telling me not to worry and that children don’t get COVID-19 or Long Covid?

Long Covid is a real phenomena. Parents often see changes in their child before others because they know their child so well. Many of the parents in our support group have children that got ill in March 2020. A large number of parents were initially told by medical professionals, friends or family members that children 'do not get Coronavirus', or that, 'Children do not have long lasting symptoms of COVID-19'. This is not true. Parents have reported that healthcare professionals have made them feel that they are 'fussing' about their child's recovery. Some parents have been told their concerns are all in their 'head', or that they are 'attention-seeking, anxious or depressed'. Unfortunately, this has been a common occurrence, which is beginning to change, although we are aware it still happens. Long Covid has been somewhat accepted in adults. Recent studies do confirm that children do get COVID-19 and can have long-lasting symptoms. It is important that you take your child to your doctor for a diagnosis. If you are unsatisfied with your doctor's response and you are concerned about your child, do not hesitate to take your child to the emergency department or call for emergency support if the symptoms are not improving and your child's health is deteriorating. Never doubt your instincts. You may need to take your child back to your doctor several times before receiving a diagnosis. Doctors are waiting for training and this will take time. Get support. If you need moral or emotional support, or practical advice please join our group. There is a wide and diverse range of experiences among parents/carers of children with Long Covid. You can get advice on how to help your doctors understand what is going on with your child's health.

I am struggling to get my child diagnosed with Long Covid, what should I do?

It can be challenging to get a diagnosis of Long Covid, that doesn't mean your child's illness isn't real. Long Covid is recognised in the UK. However, it can still be challenging to find a doctor who will diagnose Long Covid. There isn't a simple blood test that can help, so diagnosis is made based on clinical signs and symptoms. Note that the NICE guidance and recent adult definitions recognise that you don’t need a positive test to be diagnosed with Long Covid. Obtaining a referral to an expert or one of the 15 new Long Covid Paediatric Hubs can be a challenge. Doctors are busy people and they are only just starting to receive Long Covid training. Help your Doctor by tracking & documenting your symptoms Long Covid symptoms are relapsing and remitting; they can come and go, sometimes in clusters, sometimes on their own. Families report that it can be difficult to remember the full range of Long Covid symptoms. Long Covid is diagnosed by thorough assessment of clinical features such as signs and symptoms of illness alongside professional opinion. To be able to diagnose Long Covid your doctor will need to know about all of the symptoms that your child has. It is advisable to track symptoms, especially if you have more than one child. Download the PeopleWith App and start creating a log of your child's symptoms daily. You will be able to print off, or email your doctor a report that will support your concerns, and this will also help you keep track of your child's recovery pathway. Or alternatively keep your own record of symptoms and when they occur - noting down if there is anything that is a trigger for your child? See the downloadable GP letter on the Home page here. We recommend PeopleWith because you can log medications, treatments and symptoms. These can be sent to your doctor (or anyone you choose) in a report that the app prepares for free and this means you don't have to worry about remembering. Just log daily. Be prepared. You may need to take your child back to your doctor many times before receiving a diagnosis. Long Covid is a new condition and there are many unknowns. Keep tracking your symptoms - even the small changes can be significant. Update your Doctor regularly. Never doubt your instincts. You can book an appointment whenever you feel it is necessary. You can also email your doctor a report from the PeopleWith App and ask for a callback or a telephone appointment. If you are concerned, it is important to keep going back to your doctor. Ask for a second opinion. Never doubt your instincts. You can seek a second opinion, your doctor should facilitate this request. It is always better to work with your doctor whenever possible, however in some circumstances, it may be advisable to change doctors.

I keep being dismissed by medical professionals regarding my child’s symptoms. What can I do?

Gaslighting Be aware of Gas Lighting. Medical gaslighting is when healthcare professionals downplay or dismiss symptoms you know your child is feeling and instead, they try to convince you that symptoms are being caused by something else - or even that you or your child is imagining them. Advocating for your child or teenager You may be your child’s voice and only you can make it heard. If your child is able to speak for themselves in sessions do let them share their experience in their own words. Keep accurate records of your child’s activities and symptoms. Using pictures and videos can be helpful too. Print evidence of recent diagnostic criteria, research and Long Covid Kids advice. Access initially through your GP and if you are being dismissed then raise an issue with the practice manager or seek a second opinion. Be aware that the Long Covid Paediatric Hubs/Clinics for children are postcode dependent and often have strict referral criteria. Be aware of these and demonstrate how your child meets this. Join our SUPPORT Group Our members have a wide range of experience from around the globe and can offer support that may help your doctors understand what is going on with your child's health. There may be others in your area who have had similar issues and can provide advice. Liaising with your child’s education provider can be helpful to access other services too. Put it in writing If you feel that your concerns are not being addressed other options can include: Writing to your doctor to explain how you feel and give them a chance to reflect - include your PeopleWith report. Provide a reasonable deadline for them to respond. Write to the practice manager to raise your concerns and ask for their advice. Provide a reasonable deadline for them to respond. Write to your doctor and ask them to put their opinion in writing. Provide a reasonable deadline for them to respond. If necessary you can write to the GMC or other health registration bodies to register a complaint. Remember to keep copies of all correspondence.

What if my child or teenager is diagnosed with another condition? Does this mean they don’t have Long Covid?

Many families are seeing their children or teenagers diagnosed with other conditions such as Functional Neurological Disorder or M.E./CFS. Although some overlap of symptoms exist in these conditions, it is appreciated that not all professionals are well versed in Long Covid. As such, it would be recommended to focus not on the label or diagnosis provided but on the symptoms exhibited by your child and how they can be helped.
Long Covid is a patient advocate umbrella term for ongoing symptoms following COVID-19 infection however COVID-19 can exacerbate (make worse) your child’s previous health conditions (e.g. asthma, diabetes) or trigger new, but already named and recognised health conditions such as ME/CFS, Mast Cell Activation Syndrome (MCAS), PANS/PANDAS, and Postural Orthostatic Tachycardia Syndrome (POTS).

Is Long Covid Contagious?

There is no evidence to say that Long Covid is contagious. Long Covid is the umbrella term used to describe long lasting symptoms after COVID-19 infection. Please see the NHS website and our ' What Is Long Covid?' page for the most up to date information. However acute COVID-19 infection is highly contagious. It was originally thought that the COVID-19 virus was contagious 2-3 days before initial Covid symptoms show, and up to 14 days after onset of symptoms, with the average time from infection to symptoms being 5 days. Now it is thought to be 2-3 days before initial Covid symptoms to 10 days after onset of symptoms. The UK guidelines on isolation have changed to 10 days duration (correct as of November 2021). More information can be found on the NHS website. It is possible to test positive for much longer, but that is a generally due to a positive test for viral RNA, and NOT the infectious virus. We are advised that this may be a problem for people admitted to hospital who might not be discharged until they test negative. That can be for 70-90 days after infection.

What does Long Covid feel like, how do children and teenagers describe their symptoms?

This is such a difficult question to answer as case reports vary. Most children feel weak, tired and unable to participate in their usual daily activities. They may also have short periods of energy however these often do not last long. Often a child will have more than four symptoms. More often, symptoms come and go. They can also be constant. This is especially true of the fatigue. Fatigue is more than just feeling tired, some people liken it more to energy limitation or use the analogy of a battery running down. Our survey of 510 children found: Symptoms like fatigue, headache, muscle and joint pain, rashes and heart palpitations, and mental health issues like lack of concentration and short memory problems, were particularly frequent and confirmed previous observations, suggesting that they may characterise Long Covid. Urgent research is needed. To read the full findings please see the Research Page. Please see the Symptom Gallery for a wider understanding of the range of symptoms. Children can often seem generally 'out of sorts'. Parents and carers report: Changes in behaviour A reluctance to eat their usual foods Difficulty sleeping Extreme tiredness Odd symptoms Emotional dependency or difficult regulating emotions Please give your child time to recover. Rest is their friend and they may need to rest for many months. Keep seeking medical advice as many times as you need to.


Can we treat Long Covid?

The long-lasting symptoms of COVID-19 are just being documented in children. As yet there isn't an official treatment plan or an agreed clinical diagnosis (the recent WHO definition of post COVID-19 condition listed earlier recognises that a separate definition may be applicable for children). Clinicians can draw on their knowledge from other post-viral conditions, which may be helpful. However, families should be mindful that everyone is still learning, and misdiagnosis is common. In time, research will provide a clearer clinical definition and symptom list. We also need to see an agreed standardised recording of symptoms to help understand the prevalence of Long Covid in children and young people. Our friendly SUPPORT GROUP provides a connection to families around the world. Parents share information, signposting and healthy discussion. Rest, Rest, Rest. Children may feel that they can 'do more, but we would advise a cautious approach. Families report that they "wished they had encouraged more rest at the beginning". We are following research on this with interest. Some of the children in our support group have been resting for 18 months. The duration of Long Covid is not yet known. Do take a look at our “ Cautious Tortoise” guide for an easy to use flow chart that explores recovery in children. Please see the other questions in this section and our Resources pages for more treatment/recovery ideas. Please see the RECOVERY page. While we wait for research to map Long Covid, we can take a holistic and proactive approach to aid recovery. Talk to our support group members who have had lived experience. Children can initially show positive signs of recovery. Children can then develop Long Covid 5-6 weeks later. It is worth noting that some families have reported a new onset of symptoms up to 8 months after infection. In addition, families of children living with Long Covid are reporting new symptoms up to 18 months after COVID-19 infection. We can say that it can take a long time to recover from COVID-19 infection. We don't know how long. There is strong evidence from other post-viral conditions that rushing back into 'normal routines/pressures' can trigger long term chronic health conditions so be more tortoise, less hare. *Always seek advice and support from your GP before trying any medications, supplements or treatments.

What treatments will help my child recover?

As long covid is still a relatively new condition, there are no official recommended treatments as yet. We do know that Long Covid is a mixture of many different symptoms which vary for each individual. Health care professionals do have the knowledge to treat symptoms as and when they present. Many Long Covid clinics have a multi-disciplinary team that can look at each of these symptoms and what treatments are available. This will normally involve physical and mental health specialists alongside allied health professionals such as occupational therapists and physiotherapists. Evidence from these clinics so far suggests that an holistic approach is best to enable recovery. *Always seek advice and support from your GP before trying any medications, supplements or treatments.

Why does my child appear so exhausted when they haven’t done much?

Post Exertional Malaise (PEM) or Post Exertional Symptom Exacerbation (PESE) can present as an abnormal physiological response as a result of physical or cognitive exertion. It can be difficult to ascertain tolerance to exertion as PEM/PESE can present up to 48 hours later. Some practitioners find that a heart rate monitor may give a better real time analysis of acceptance of exertion. NICE guidelines reinforce this as a management tool for fatigue. It can also be useful to keep a diary of activities and symptoms to help identify triggers. You can find more information on this on the Long Covid Physio website.

How often will relapses occur?

Everyone is different so it is impossible to say. Some may never relapse and others may relapse on a regular basis. What we do recommend is use of pacing and self-identification of triggers to attempt to reduce relapse occurrence.

What is pacing and how can it help my child or teenager?

Pacing helps reduce the risk of relapse and aids recovery. Think of energy like pocket money; you can't spend it twice! We need to 'budget' energy throughout the day. Please see our RECOVERY page for more information. Some people with chronic energy limitation find the concept of Spoon Theory helpful for budgeting energy. Long Covid Kids is in the process of developing the Pacing Penguins Guide, please sign up to our newsletter for updates.

Will graded exercise benefit my child or teenager?

Anecdotally, we have heard that some professionals have been prescribing this as a treatment. The recently published NICE guideline for M.E/CFS reviewed the evidence-base and suggested that graded exercise therapy (GET) is not appropriate in energy limiting conditions such as M.E/CFS and Fibromyalgia. As Long Covid is a new condition, we have to draw our research from conditions with similar symptoms such as fatigue. With this in mind, GET is not recommended for a child with Long Covid, particularly in those with Post Exertional Symptom Exacerbation. In the USA the CDC recommends a cardiology review before return to any exercise.

What activities can my child still enjoy?

We recommend a cautious approach to recovery and a need for initial rest and recuperation. Research shows that doing things we enjoy increases wellbeing within individuals, but if they are still experiencing symptoms it is best to reintroduce activities slowly and in moderation. More information will be coming on our recovery page about how to balance activity and rest to reduce the impact on symptoms but do seek support from your GP or healthcare professional on how to pace activity. It is instinctive to want to stop children from suffering, however, we also need to support children to learn to recognise their own triggers and develop insight into their condition to allow future self management. They will need help with this to start with, and it may take time and trial and error to get the balance working for them.

When and how should my child or teenager return to school?

Families regularly report that they feel external pressure to send their children back to school. We advise caution. Seek support from your Doctor/Health Care Professional and liaise with the school special educational needs and disabilities co-ordinator (SENDCO). Your child may need a referral to an NHS Paediatric Long Covid Hub, or a local paediatrician. Having an Occupational Therapist or Physiotherapist on your team can be helpful. Ask your GP for a referral or you can seek support privately if needs be. Always try to work with your school to agree on a plan that prioritises your child's recovery. Join our support group if you need more information and see our Tips for Teacher Guide and Cautious Tortoise guides on the RECOVERY page.

Will alternative therapies/special diets help?

It is very tempting to search for a solution elsewhere when healthcare practitioners don’t yet have clear answers for us. However, we urge caution. There are many diets or therapies that claim that they are “proven” to work for similar conditions to Long Covid. Many of these have little medical basis/evidence or poor quality research related to them. Some providers are unscrupulous/unqualified and will take money from parents desperate to help their child recover. These treatments/diets may help some anecdotally, however we are unable to endorse any. Be cautious of anyone promising a cure. There may be some opportunities to engage your children with research into new treatments and Long Covid Kids is often approached to help co-produce, review or recruit to these studies. Your healthcare practitioner may also be able to advise you on studies that your child is eligible for.

As a parent, I am feeling emotionally drained. What support is there for me?

Most areas have a group for carers which you can access. Register as a carer with your GP and they can provide extra resources and sometimes extra flexibility for your own health care needs. Tell family and friends how you are feeling and don’t be afraid to ask for practical support. Having someone to help with cleaning, shopping or batch cooking you some meals can give you time to rest or spend with your child. Try and take time for your own self-care. We wrote a blog post on this here, and on grief and acceptance here. Of course, peer support is very beneficial and interacting with other parents in similar situations on our support group can be useful.

Will my child or teenager ever fully recover?

We wish we could answer this. Our support group is full of lovely recovery stories so it does happen. Every child is different and there are Long Covid clinics out there working towards recovery so our hope is that every child will too. However, if this is not the case, there are many things that can be done to help your child (and you) adapt appropriately.


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. Long Covid Kids have been calling for an improved COVID-19 symptoms list 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
 Sore Throat
 Emotional Dependency
 Mood changes
 Tummy Pain
 Cold Like Symptoms
 If your child is unwell please book a PCR test. Accessing ongoing support without a positive test can be more challenging.

I think my child or teenager has COVID-19, when should I get a test?

Get a test immediately. 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. Please note that if your child is symptomatic you should get a PCR test, the rapid Lateral Flow Tests are only designed to be used for picking up asymptomatic infections. 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 group 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. 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. You may find it difficult to get the correct diagnosis, and you may get misdiagnosed. The government uses the data on positive cases 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 various reports on our facebook group indicating reinfection is possible. 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, 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.