Question 1

Are PIMS-TS and MIS-C the same thing?

Accepted Answer

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

Question 2

What is PIMS-TS?

Accepted Answer

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

Question 3

What are the symptoms of PIMS-TS?

Accepted Answer

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

Question 4

What should I do if my child is unwell with the symptoms of PIMS-TS?

Accepted Answer

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

Question 5

Are Black or Asian children more likely to be affected?

Accepted Answer

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

Question 6

What if my child has not had COVID-19?

Accepted Answer

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

Question 7

How is PIMS diagnosed and treated?

Accepted Answer

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

Question 8

Are children hospitalised with PIMS?

Accepted Answer

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

Question 9

Do children die from PIMS?

Accepted Answer

Until December 2021 we were unable to find any public data.   In December 2021, 1 child PIMS-TS death was reported.   Updated Feb 2022

Question 10

What follow up care should be offered to a child recovering from PIMS?

Accepted Answer

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.

Question 11

Should patients with a history of PIMS receive the COVID-19 vaccine?

Accepted Answer

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.

Question 12

What is Long Covid?

Accepted Answer

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.

Question 13

How much do we understand about Long Covid?

Accepted Answer

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.

Question 14

Who can get Long Covid?

Accepted Answer

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.

Question 15

Are some people more 'at risk' of getting Long Covid?

Accepted Answer

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.

Question 16

When do the symptoms of Long Covid start?

Accepted Answer

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

Question 17

How common is Long Covid in children?

Accepted Answer

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.

Question 18

How much impact can Long Covid have on daily life?

Accepted Answer

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.

Question 19

Does my child need to have a confirmed positve COVID-19 or antibody test to receive a diagnosis of Long Covid?

Accepted Answer

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.

Question 20

When can my child receive support for their symptoms?

Accepted Answer

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.

Question 21

​ How long will it take for my child to get better?

Accepted Answer

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.

Question 22

What are the symptoms of acute COVID-19 infection in a child or teenager?

Accepted Answer

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.

Question 23

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

Accepted Answer

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.

Question 24

Does it matter if I don’t get my child tested?

Accepted Answer

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.

Question 25

My child has passed the isolation stage but still has symptoms, do they still need to isolate?"

Accepted Answer

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.

Question 26

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?"

Accepted Answer

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.

Question 27

PIMS-TS

Accepted Answer

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.

Question 28

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?"

Accepted Answer

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.

Question 29

Where can I find out more about COVID-19 Vaccines for children and young people?

Accepted Answer

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.

Question 30

How can I reduce risk?

Accepted Answer

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.

Question 31

What support services do LCK offer?

Accepted Answer

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 - 11 Years  12 - 14 Years 15 plus Years  Parents & Caregivers   ChatBox   ‘ChatBox’ Online Forum welcomes parents, caregivers, children and teenagers from ages 8 - 17 years. Separate age-appropriate channels provide a safe space for peer to peer support.   8 - 11 Years  12 - 14 Years 15 plus Years  Parents & Caregivers  The benefit of ChatBox is that members can choose to be part of specific topics and discussions that interest them. For example, children can connect with other children, form supportive friendships in their country, or with children of similar ages or comparable duration of symptoms.   ChatBox can be used in between LCK Connected sessions to continue to build relationships and gain support.  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.

Question 32

Who are LCK support services for?

Accepted Answer

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

Question 33

How do I register for the support services?

Accepted Answer

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.

Question 34

Are LCK support services free?

Accepted Answer

Yes our services are free.   We are a charity and rely on donations.   Donations are welcome but not expected.

Question 35

Are there any support services for children under 8 years?

Accepted Answer

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.

Question 36

What safeguarding steps are in place?

Accepted Answer

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

Question 37

Where can I raise issues or concerns?

Accepted Answer

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

Question 38

Where can I find out more?

Accepted Answer

For general enquires about our support services  please email  supportservices@longcovidkids.org  Read  our Safeguarding Policy.  Read our Terms and Conditions.

Question 39

I have registered on the website but I keep getting “You don’t have permission to access this page”

Accepted Answer

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.

Question 40

I have completed a form and have only been granted access to one area of the support services website.

Accepted Answer

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.

Question 41

I have completed the form and I still cannot access the page

Accepted Answer

Try refreshing your browser and trying again.  The page sometimes needs a little patience to load, so do give it a chance.

Question 42

I have registered on the website and have been given access to the wrong area, what can I do?

Accepted Answer

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.

Question 43

What is Long Covid ?

Accepted Answer

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.

Question 44

How long does it take to get better from Long Covid?

Accepted Answer

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.

Question 45

Who gets Long Covid?

Accepted Answer

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.

Question 46

Who can I talk to?

Accepted Answer

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.

Question 47

Can I talk to other kids with Long Covid?

Accepted Answer

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

Question 48

What if nobody believes me ?

Accepted Answer

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.

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