Can we treat Long Covid?
The long-lasting symptoms of Covid are only just being recognised in children. As yet there isn't an official treatment plan. Hopefully research will change that, but until then our Peer to Peer support group of parents can share anecdotal evidence, that they have found helpful. You don't have to feel alone, there is support for you and lessons we have learnt can be heeded, to make your journey through this tough time easier.
Rest, Rest, Rest.
We feel this is the most important thing you can do for your child. Some of our children have been resting for 12 months.
School
Do not rush to send your child back to school, even if they show positive signs of recovery initially, it can take a long time to recover from a virus like Covid. Discuss this with your doctor. There is strong evidence from other post-viral conditions that indicates rushing back into 'normal rountines/pressures' can trigger long health chronic conditions. As a group, we are working on raising awareness with the Department of Education and Public Health, seeking understanding and support.
Unfortunately, we are aware of the pressure some schools are placing on parents of children with Long Covid. Always try to work with your schools and together come up with a plan that will enable your child to recover at the pace they need.
Activity
Keep your child's activity level low, and monitor their total wellbeing. If the school is pressuring you to send your child back before you feel they are ready, ask for a referral to the school nurse, and if that doesn't help join our support group for more information on how to manage this situation and prioritise the health & wellbeing of your child.
Resources
See the link to Nature Doc on our
Resources page for information on supporting post-viral wellbeing. While we wait for research to develop understanding of Covid, we can take a proactive approach and try to give the body everything it needs to heal itself.
Has my child got Long Covid?
Children exhibiting long-lasting symptoms from COVID-19 virus most likely have Long Covid it does not matter if you child was not tested at the initial time of infection, or if they tested negative and developed symptoms at a later date.
Has your child got new clusters of symptoms affecting different parts of the body, often including a rash (but not always)?
Children with clusters of symptoms most likely have Long Covid.
Is your child having repeat episodes of symptoms that come and go?
Children with Long Covid experience this.
If your child experiencing a flare-up of old symptoms after a potential exposure to Coronavirus?
This is seen in children with Long Covid.
Have other people your child has had contact with had Coronavirus, perhaps in their school bubble 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. It is possible that a child or adult at school was asymptomatic too.
Has your child started behaving differently?
Behaviour changes are seen in children with Long Covid, often before symptoms appear.
Can you recall your child complaining of tummy ache recently?
Younger children often describe a general feeling of unwell as tummy ache, this could be Long Covid.
Have other members of your family/bubble tested postive?
Resources
Any symptom could be Long Covid. Please see our Symptom Gallery and a short film for the symptoms many parents/carers of children with Long Covid have reported.
Always seek medical advice.
Our guidance is here to support, not diagnose. We are not qualified and can only provide anecdotal evidence and information from lived experience.
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, that doesn't mean your child's illness isn't real.
Despite Long Covid being accepted in the UK, it can still be challenging to find a doctor who accepts and is able to support a child with Long Covid.
Doctors are busy people and need time to catch up and be aware of the latest updates on Covid. We hope that the recent NICE guidelines will make the process smoother.
Track your symptoms
Long Covid symptoms can come and go, sometimes in clusters, sometimes on their own. Your doctor will need to know all about your symptoms to be able to diagnose you correctly. It can be hard to keep track of your symptoms, especailly if you have more than one child, or have Long Covid brain fog yourself.
We recommend downloading the PeopleWith App, and logging symptoms on a daily basis. We love it because you can send your doctor (or anyone you choose) a report that the app prepares for free and this means you don't have to worry about keeping notes.
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. Have a look at our downloadable GP letter on the
Home Page.
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 your child has symptoms that you are not happy with, it is important to keep going back.
Ask for a second opinion.
Never doubt your instincts. If your child has ongoing symptoms and you are unsatisfied with the support you are receiving you can seek a second opinion, or if needed, change doctor. Try to work with your doctor if you can.
Put it in writing.
If you are struggling to feel heard other options can include;
Write to your doctor to explain how you feel and give them a chance to reflect, include your PeopleWIth report.
Write to the practice manager to raise your concerns and ask for their advice.
Write to your doctor and ask them to put it in writing that they do not believe your child has Long Covid and that they are not concerned about your child's health.
Gas Lighting
Be aware of Gas Lighting. Medical gaslighting is when health-care professionals downplay or dismiss symptoms you know your child is feeling and instead they try to convince you they're caused by something else—or even that you're imagining them.
Get support.
For peer to peer support please
join our group.
We have a wide range of experience. on how to 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.
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 has COVID, when should I get a test?
Get a test immediately.
Children should be tested as soon as you suspect they have Covid. Be aware that symptoms can be so varied and any signs of unwellness should be considered that it is potentially a Covid infection.
Children can present with different symptoms to adults, use your own judgement, you know your child best. It is a lot easier getting ongoing medical support for your child if they have 'evidence' of being positive hence why
it is so important they have a test ASAP if they show any signs of being unwell. Please see our downloadable symptoms poster on the Home page.
Get support
If you need moral support or practical advice please join our group. There is a wide range of experiences.
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.
My child has already had Covid, are they immune to getting it again?
At the moment it looks like immunity is unlikely, please read more here.
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 recent 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
Please give your child time to recover. Rest is their friend and they may need to rest for many months.
