Families struggle to get treatment for children with long COVID symptoms

Today's (20 July) report from the UK is a snapshot of how a very small number of young people and their five families have fared, including those who are believed to have long COVID.

It's not a peer reviewed study, but very much an introduction to a much larger study of just under 2,000 school children in Bristol, a large city in western England.

The children at those schools have been given regular antibody tests over the past eleven months and they will be tracked over several years.

However those first results won't be known until the end of the year.

The problem in the intervening time is that scientists can't ascertain the prevalence of long COVID because most of the young people who have had symptoms did not access a test, so their infection hasn't been confirmed.

Since the pandemic started doctors have become increasingly aware that patients recovering from COVID-19 were experiencing symptoms ranging from fatigue and cognitive difficulty, to breathlessness.

Because the disease in many children is asymptomatic, or very mild there hasn't been a clear pathway to a diagnosis for long COVID in youngsters.

For months parents have been forming online groups to discuss symptoms in their children, which the medical profession has had difficulty treating.

The study recognises their problems in seeking treatment, and also the problems distinguishing long COVID in children from other conditions.

The chief author of the report Professor Caroline Relton admits it's a situation which can't be 'fixed' in the short term.

"One of the root causes of this frustration, I think, is that there isn't actually a clear clinical diagnosis of long COVID not in adults and not in children. So for a parent to go to a GP and get a diagnosis, the GP is without the tools to do so. Also, the the wide range of symptoms that are common appear to be common in long COVID mean that it's actually quite difficult to know which specialist to to be referred to in the first instance. So there are examples of extreme tiredness, of gastro intestinal pains, of joint pains and many, many of the manifestations of long COVID," says Relton.

She believes this problem is likely to continue until guidance has been issued by the National Institute for Clinical Excellence.

Relton's report 'Enhancing the Utilization of COVID-19 Testing in Schools', the study draws upon information from three main sources.

COVID-19 Mapping and Mitigation in Schools, electronic family doctor records and the Schools Infection Survey.

It says: "Doctors still need to understand whether long COVID is a new condition, or a group of conditions like post-viral fatigue, which is already recognised and can arise after common infections, such as the flu and glandular fever."

The findings are based on a short period of time between 9 March and 30 April this year (2021).

The research included an online meeting with seven young people aged between 13 and 18, meetings with five families whose children are suspected of having, or diagnosed with having long COVID.

The study also included surveys completed by a handful of GPs (community doctors).

A diagnosis for some of the children came after a long time and persistance from the parent.

But Relton cautions against calculating the prevalence of the disease based on short term results.

She says: "Many of those individuals who are experiences experiencing these long term symptoms have no record or were not able to access a test at the point at which they were infected. So so it would be somewhat inaccurate to to define the prevalence of long COVID without that diagnosis and without the evidence that these individuals have been infected in the first place."

Part of the study asked teenagers to list the symptoms that gave them most concern out of a list of twenty which included extreme tiredness, chest pain, insomnia, palpitations, dizziness and joint pains.

The report also found that symptoms typically associated with long COVID were having a significant physical and psychological impact on children's day-to-day lives.

Relton believes until a diagnosis doctors should treat symptoms as present in children.

"I think treating symptoms as as you would whatever the source, so there'll be a tendency to to assign the cause of of symptoms to COVID, but regardless of whether they the symptoms are caused by covid or not, I think treating joint pain or headaches or tummy aches or temperature in the way that you would treat them if they had any other cause, I think would be my recommendation for the time being," she says.

As the problem has become more obvious in the UK specialists in infectious disease have been establishing ways to stop children with symptoms going undetected.

Dr Liz Whittaker is Senior Clinical Lecturer in paediatric infectious diseases and immunology at Imperial College London.

Whittaker and Imperial were not involved in the study released today (20 July 2021).

However they say they have been involved in teams ensuring children with symptoms are referred to a paediatrician.

Whittaker believes GPs are now primed to look out for children with long COVID symptoms.

"If children are presenting with concerning symptoms there's a really clear pathway to make sure they have the right investigations which might include a chest x-ray, or a heart scan, or bloods and things like that, but thankfully that isn't something we've seen described in young people," says Whittaker.

She says: "If they're not happy (parents) they can go an see a different GP, or they can just ask for a second opinion, but actually I think that now that we've explained and establised these pathways, that GPs will be aware that this is a path they can take."