Long Covid is now estimated to affect 2 million people in the UK, and almost 145 million globally. It’s a complicated diagnosis to receive and those affected have to cope with both the physical symptoms and the psychological strain of having an illness that is not yet well understood and does not have well-established treatments. We heard from three long Covid patients on how they navigated this journey.
Dylan, 10: ‘It felt like the doctors didn’t believe me, which made me really sad’
Unlike many adults who caught Covid at the start of the pandemic, seven-year-old Dylan didn’t have a continuous cough or fever when he became ill in late February 2020. Instead, he had bad stomach pains, bouts of vomiting, night sweats, aches and extreme tiredness.
When he started complaining that it was difficult to breathe, his mum, Heidi Bohrn, initially thought he was having a panic attack. An NHS adviser had already told them to avoid hospital unless Dylan developed a fever, because of the risk of catching Covid.
Several days later, Heidi was also experiencing breathing problems but with no Covid tests available, the family held tight. Six weeks later, Heidi was improving. However, Dylan’s problems had only just begun.
He began vomiting bile every night, and his heart and breathing problems returned. Other seemingly random symptoms – a rash on his stomach, nosebleeds, involuntary shaking – would appear and disappear, as if on a loop.
At the start of 2020, Dylan had been a healthy child growing up in Buckinghamshire, UK. A video taken in January captured him happily splashing about in the waves during a family cruise to the Caribbean. Now he struggled to get out of bed most days, let alone play with his toys and friends.
Throughout the pandemic, children’s experiences of Covid have been largely downplayed. Because they seemed less likely to become seriously unwell, the general assumption was that, unless they were unlucky enough to develop a rare but serious condition called multi-system inflammatory syndrome, they would be fine.
We now know that up to one in seven children and adolescents still have symptoms 15 weeks later – including unusual tiredness and headaches – while about one in 14 have five or more persistent symptoms. And, whereas trials for potential treatments for adults with long Covid have finally begun, none of them involve teenagers or children.
“The biggest challenge is that GPs don’t know how to recognise long Covid, and they don’t understand when to refer,” says Sammie McFarland, founder of the Long Covid Kids support group. “We’re still fighting against that early narrative that children weren’t affected. It has created a barrier to getting any support or belief.”
Although Heidi had private healthcare insurance, she had to fight to get Dylan seen by a doctor. When he was finally assessed, it was to check his chest pains weren’t symptomatic of an underlying heart condition. They weren’t.
“The doctor didn’t believe it was long Covid,” Heidi says. “He kept saying, ‘Kids don’t get it.’ Because we didn’t have a positive PCR test, they were in complete denial. I think that’s what upset us most: because there’s no physical test that shows a biomarker [for long Covid], it must be all in your head.”
Frustrated, the family turned to internet support forums. “The support, emotionally and psychologically, has been immense,” says Heidi. “Dylan’s also been chatting to other kids, so it’s nice for him to feel like he’s not alone”
They found practical suggestions online too. Because some adults with long Covid had anecdotally benefited from taking antihistamines, some parents had tried giving them to their children, with some success. After speaking with a pharmacist, Heidi suggested Dylan give them a try. She also started him on a low-histamine diet (avoiding foods such as oranges,…
Read More: ‘It felt like I was never going to get better’: patients navigating long Covid |