Susannah Hollywood - 800 word blog post - created May 2024

Long covid in kids and the search for information: where to start

For many kids, covid is no worse than other viruses. Laid low temporarily – if at all – they bounce back quickly and have no lasting issues. 

But a small number of children have covid and don’t recover as expected. They go down with fatigue, headaches, upset tummies, brain fog, heart palpitations, breathlessness… and it doesn’t go away for months, occasionally even years.

When covid symptoms continue (or new ones develop) in the three months after the initial infection and last for at least two months, this is called ‘long covid’.

Long covid can reduce active, confident, energetic children to ones that can barely climb stairs, or complete a single piece of homework. No more football, no more dance class. For some, no more school.

No appetite, no strength, no get-up-and-go.

Battling crippling fatigue and a host of other unpleasant physical and mental symptoms (the list is long - the World Health Organisation says there are more than 200), kids with long covid often become a shadow of their former selves.

There’s still a lot we don’t know

Having a child with long covid is tough for a parent to experience.

Sitting by, watching and waiting, desperately hoping that each new day is the start of your child’s recovery.

And getting very little in the way of clear guidance and concrete answers.

Because there is much that is not yet understood about long covid. It’s new and complex, and the medical and scientific communities are scrabbling to catch up.

The information available in the early days was scant, vague, and uncertain, leaving many people feeling powerless and frustrated.

But we’re learning more and more

But if your child is in this situation, don’t despair. More information is starting to emerge as the condition is recognised, research is carried out and charities are established.

The data from the covid years is being crunched. The knowledge of other post-viral conditions is being extrapolated.

And more people are getting behind the cause. Combining their stories and their expertise, the long covid community is raising the profile of this condition, making the case for funding more research and supporting each other.

If my child has long covid, where should I start?

So where should you look to find good information which may help if you have a child with covid symptoms that are not going away?

Here are my suggestions for places to start.

For a simple-language summary of long covid (not specific to kids), visit the NHS website.

The British Heart Foundation (BHF) also gives an overview but goes into more depth, and not just specific to heart issues. There’s information on symptoms, tests and treatments and a page with tips on how to manage fatigue, breathlessness and more.

A search on ‘Living with long Covid’ on the BHF site will also pull up testimonials of people with the condition, which may offer personal insights not covered elsewhere.

If you are keen to get further into the detail, you can go directly to clinical research papers, and a Google Scholar search on ‘long covid children’ will provide pages of published study papers.

Some of these, however, are locked behind paywalls, and even those that are available may feel inaccessible due to their complexity. But if you’re searching for something specific, this may be the place to find it.

For example, this 2022 study investigated the average duration of long covid in kids and found that 54-75% of kids recovered within 5 months of their initial covid infection.

If you’re interested in the ongoing research, you can read about the UK Government’s investment and priorities in this area, as well as their latest findings. And there’s a whole website on the US Government-funded RECOVER study.

Moving on to sources that are specific to children with long covid, in this UNICEF video a specialist in paediatric infectious diseases gives a summary of symptoms, duration, treatments and prevention.

And in this interview, one of the researchers of the Recover study explains some of the differences in symptoms between children and adults with the condition.

The UK-based charity Long Covid Kids is an invaluable hub of support and resources. On their website, you can find a wealth of information on symptoms, interventions, community groups, educational resources, current research and more.

This blog post from the charity, in which young people describe how it feels to have long covid, is a poignant read.

Two parents of kids with long covid share their tips on how to support their children in this article, including the importance of believing your child when they report how they feel.

And for anyone struggling with the lack of certainty in this area, this piece on ‘Navigating without a map’ may resonate.

Lastly, here’s a thoughtful first-hand account of what it’s like to have a child with long covid, written by a mum who’s an Educational Psychologist. The author gets granular about her own feelings and how she’s worked to accept their new situation.  

Knowledge is power

These suggestions are just the tip of the iceberg, a jumping-off point for finding other sources on topics you want to dig deeper into.

Informing yourself won’t take away all the challenges that you and your child face or give you all the answers that you need.

But it will allow you to better advocate for your child and to make more informed decisions.

It can reduce feelings of fear and hopelessness. It can help you to feel more in control.

As Kofi Annan said, “Knowledge is power. Information is liberating”.