My sporty son is bedbound with long Covid – nearly every doctor let him down

Sly Saint · Sep 30, 2024

Children are still suffering long term effects from Covid-19, but the condition remains a mystery - leaving families in despair, and some experts calling for better vaccination of young people

In early March this year, Becky O’Connor’s 12-year-old son became sick.

First he had a rash that moved all over his body and suffered swollen tonsils. Then, after a course of penicillin he developed a bad cough.

Becky and her husband didn’t make the Covid connection at first – “in March 2024 we weren’t really in the mindset of Covid and just thought he had a bad cough,” she says. The next day he developed an abnormally high heart rate and shortness of breath and was advised to rest. But after that period of rest he began experiencing the same symptoms, so she had her suspicions.

“William was in the paediatric ward and I went to the pharmacy during to try and get some lateral flow tests, but couldn’t get hold of any. Then I tried to get a PCR test and I spoke to both our NHS GP and a private GP. They said that PCR tests are no longer available.”

After another diagnosis and recommended period of rest, he was encouraged to go back to normal when he felt better. As a boy who loved football and swimming, he tentatively returned to sport during the Easter holidays.

“But when he returned to school after those holidays,” Becky explains, “he completely crashed. On the first week back he had less and less energy, and he said he felt empty, like he had nothing in him.”

“Before getting infected, he was fit as a fiddle and incredibly sporty,” she adds. “He was a competitive swimmer, competitive footballer, ate really healthily and had absolutely no indication that he would ever be vulnerable from a health point of view.”

As time went on, his symptoms worsened while doctor after doctor sent them in the wrong direction. He developed allergic symptoms, poor circulation, restless legs, and drooping eyelids alongside fatigue, shortness of breath and inappropriately high heart rate.

Over the course of over three months he was diagnosed at various stages with tonsillitis, a bad cough, pleurisy, Epstein-Barr virus, post-viral fatigue and exhaustion from finding year seven “a bit much”.

“People just referred to it as a virus,” says Becky. “Covid was only brought up at the end of June by a private immunologist. The cardiologist, the pulmonologist, the GP, the paediatrician – none of them would say Covid or long Covid or even test for it.”

That immunologist listened closely to his symptoms and did extensive blood work. This showed that he had spike antibodies, among other things, that indicate long Covid. He was, at this point, finally diagnosed.

Four years on from the start of the pandemic, long Covid remains a mystery. “We still do not have a definitive test or set of criteria that can help support the process and diagnosis of long Covid,” explains Mark Faghy, an associate professor in respiratory physiology at the University of Derby who is working on a number of long Covid projects. “The broad definitions that we have at our disposal are still subjective and open to interpretation.”

The National Institute for Health and Care Excellence defines it as “a multi-system condition with a range of debilitating symptoms – signs and symptoms continue or develop after acute Covid-19, continue for more than four weeks, and are not explained by an alternative diagnosis.” These symptoms can include those found in acute Covid and can also include fatigue, shortness of breath and cognitive dysfunction, which is most commonly reported. But over 200 different symptoms have been reported that can have an impact on everyday functioning. Research has found that a third of patients with long Covid display organ damage five months after infection.

We know even less about long Covid in children – new research published this August was the first study to show that long Covid symptoms can look different among children compared to adults. They found that symptoms in under-11s can include rashes, phobias, school refusal, nausea and headaches as well as dizziness and trouble sleeping, but not necessarily brain fog.
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My sporty son is bedbound with long Covid - nearly every doctor let him down (inews.co.uk)

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