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. 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 clinical definition and symptoms. We need to see an agreed standardised recording of symptoms to help understand the prevalence of long Covid. 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. Pacing Pacing helps reduce the risk of relapse and aids recovery. Think of energy like pocket money; you can't spend it twice! When we 'budget' energy throughout the day. Please see our RECOVERY page for more information. School Families regularly report that they feel external pressure to send their children back to school. We advise caution. Seek support from your Doctor. Your child may need a referral to an NHS Paediatric Long Covid Hub, or a local paediatrician. Having an Occupational Physiotherapist on your team can be helpful. 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 8mths after infection. In addition, families of children living with Long Covid are reporting new symptoms up to 18 mths 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 health chronic conditions. 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. Resources 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.

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

Children exhibiting long-lasting symptoms from COVID-19 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. ​ Is your child experiencing symptoms affecting any part or parts of their body since COVID 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 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 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. Has your child been to school? Children can be asymptomatic for Coronavirus and still experience Long Covid. Any child or adult at school could have been asymptomatic and transitted 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 unwellness 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.

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 blood test that can help. Obtaining a referral to an expert 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 assessment and 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. We recommend downloading the PeopleWith App, and logging symptoms daily. 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. In some circumstances, it may be advisable to change doctors. 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, including 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. Write to the GMC to register a complaint. Remember to keep copies of all correspondence. ​ Gas Lighting 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're imagining them. ​ Get support. 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.

Is Long Covid real?

Yes. 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 medical 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 we hope will change soon. Long Covid has been accepted in adults. Recent studies 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. ​ Be prepared. Download the PeopleWith App and start creating a log of your child's symptom. You will be able to print off, or email your doctor a report that will support your concerns, and help you keep track of your child's recovery pathway. Or alternatively keep your own record of symptoms and when they occur, is there anything that is a trigger for your child? See the downloadable GP letter on the Home Page. ​ Get support. If you need moral support or practical advice please join our group. There is a wide and diverse range of exepriences 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 think my child or teenager has COVID, when should I get a test?

Get a test immediately. Please BOOK a COVID-19 test immediately if you suspect COVID-19 infection. Any sign of unwellness in a child could potentially be a COVID-19 infection. Please see the FAQ on symptoms for more information on the symptoms children 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 or practical support please join our Support group where you will find a wide range of experiences from families around the world.

Is Long Covid Contagious?

Long Covid is not contagious. Long Covid is the term used to describe long lasting symptoms from a Covid infection. Please see the NHS website and our 'What Is Long Covid?' page for the most updated information. Covid is highly contagious. It was originally thought Covid 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. More information can be found on the NHS website. It is possible to test positive for much longer, but that is a positive test for viral RNA, NOT the infectious virus. We are advised that this can be a problem as people admitted to hospital can't be discharged until they test negative, and that can be for 70-90 days after infection. ​ Get support. If you need moral support or practical advice please join our group. There is a vast range of experiences within the group so hopefully we can help you.

My child has had Covid, can we get reinfected?

Yes anyone can get reinfected with Covid. Some children have antibodies after initial infection, others do not. Further research is required to understand more. Recent research shows that antibodies wane at 6-8mths.

Can you get COVID-19 more than once?

Yes. More info coming soon.

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

We are not qualified to advise. If you read the information above you can see the guidance about the contagious period. 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.

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

Yes. Parents and carers report it is harder to get medical support 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 decison making.

What does Long Covid feel like?

This is such a difficult question to answer as case reports vary. Most children feel weak, tired and unable to participate in usual activity. They may also have short periods of energy that 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. 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 'out of sorts'. Parents and carers report; Changes in behaviour A reluctance to eat their usual foods Difficulty sleeping Extreme tiredness Odd symptoms Emotional dependance. Please give your child time to recover. Rest is their friend and they may need to rest for many months. Keep seeking medical advice ass many times are you need to.

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

The vaccine is not being offered to alll childlren in the UK. On the 19 July the Joint Committee on Vaccination and Immunisation (JCVI) advised ministers that the following groups should 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 12-17 year olds who are household contacts of people of any age who are immunosuppressed Those turning 18 in the next three months On 3 September JCVI advised an expansion of this list to include children and young people aged 12 -15 years with the following specific underlying health conditions: haematological malignancy sickle cell disease type 1 diabetes congenital heart disease other health conditions as described by JCVI. *JCVI has advised that those who are severely immunosuppressed when they receive their first or second dose of vaccine should be offered a third dose as part of the primary schedule. See the next section for further information. These groups are in addition to those JCVI prioritised in earlier phases of the vaccination programme, ie those who are 16 years and over in an at-risk group (as defined by Table 3 of the Green Book). The latest infomation can be found HERE If you feel your child should be included on the llsit of vulnerable chilldren please contact your GP and ask them to tick the box that will list your child! If you GP supports your requesst, you can then arrange a vaccine via 111. There can be a short delay between the GP ticking the box and it registering on the system. In the 'files' within the Facebook support group you willl find a template letter to help you request that your child is listed as eligable for the vaccine.

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

Like adults, children can have an asymptomatic or symptomatic COVID-19 infection. A comprehensive list of COVID-19 symptoms can be found on the CDC website Long Covid Kids have been calling for improved COVID-19 symptoms lists from the NHS and Government websites. 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

If your child is unwell please book a test. Accessing support without a positive test can be more challenging.

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