May 15, 2023
Source: WHO
Photo / Image Source: Unsplash,
At 11 years old, Jay from the United Kingdom was just like many boys of his age. He loved playing football with his friends, had a passion for boxing and spent hours trying to get to the next level of the latest computer game. In short, he was a normal boy on the verge of becoming a teenager, fit and healthy and doing well at school. The idea that he might get seriously ill was the very last thing on his, or his parents’, mind.
His mother, Neera, a general practitioner (GP), explains how his severe illness following a COVID-19 infection was a shock to them all. “During the worst of the pandemic, we had moved house to accommodate my elderly mother who was struggling being on her own at such a difficult time. We’d deliberately chosen a house that was easy to get around in case she needed to use a walking frame or wheelchair – not realizing, of course, that it would be Jay who would need to be using such things.”
Initial COVID-19 infection and subsequent aftereffects Following a period of having a sore throat, runny nose and slight fever, Jay tested positive for COVID-19 on 11 January 2022. “When I first got COVID, it wasn’t that bad,” Jay tells us. “I felt a bit ill and was sleeping more than usual, but then things got a lot worse.”
By February 2022 he had developed bad stomach pains, which his mother, as a doctor, could not understand. Jay’s parents took him to the accident and emergency department of the local hospital, in the Croydon area in south London, but despite numerous blood tests and investigations, the doctors were unable to find a cause. The recurring pains meant that Jay had to be sent home from school on several occasions.
Not long afterwards, he began to develop a range of other debilitating and seemingly random symptoms, including dizziness, chest pains, night sweats, a face rash, peeling fingers, fatigue and diarrhoea.
Long COVID diagnosis
Desperate to get some answers and treatments for Jay’s severe symptoms, the family paid to see a private consultant paediatrician in April 2022. Without being able to find a conventional explanation for Jay’s illness, and given that he was suffering symptoms long after his original infection, the consultant made a diagnosis of post COVID-19 condition, commonly known as long COVID.
“It was a relief to finally have it confirmed that Jay’s condition was caused by his original COVID-19 infection, after everything else had been ruled out,” says Neera. “With it, we would hopefully be taken more seriously, and not just dismissed as we had been by some professionals who did not understand or did not believe the severity of Jay’s symptoms. It also gave us more of an idea of what we were dealing with, so we could do some research and try out suggested treatments.”
Trying to find treatments In an attempt to treat Jay’s recurring stomach aches, the consultant put him on an elemental diet – a liquid meal regimen that offers a complete nutritional profile – in the belief that he was suffering from an irritable bowel. The only solids that Jay could eat as part of this strict 4-week diet were chicken and rice. By following this diet, Jay’s stomach pains seemed to subside for a while.
However, by his follow-up appointment in June, Jay’s chest pains were worse than ever – he was waking up in the night in agony – and an attempt to take him off the elemental diet resulted in the return of his stomach problems. Although Jay was prescribed new medication, his painful symptoms stubbornly refused to go away.
A brief window of respite
Over the summer months of 2022, things started to look up. Through gentle pacing of activities, Jay was feeling less fatigued, his night sweats stopped and his abdominal pain resolved itself.
As Jay explains, “During the summer holidays, I could just sit and sleep and pace myself because I didn't need to do any schoolwork. When the holidays ended, I was fit enough to return to school and even had the energy to do boxing and play football. It was amazing – I could do all the things I wanted to do again!”
A year on from his COVID-19 infection: relapse
But this was not to last. Exactly 1 year on from his original COVID-19 diagnosis, Jay started becoming ill again, registering a high temperature and having swollen lymph nodes and a sore throat. Through a telephone consultation with his GP, this was treated as a possible Group A streptococcal infection as there was a large outbreak at that time. Medication was prescribed accordingly.
However, as his father had tested positive for COVID-19 the previous month, the family suspected that this was in fact a COVID-19 reinfection. As widespread testing was no longer available, there was no way to know for sure.
Losing mobility Regardless of the cause, Jay’s symptoms worsened again. The fatigue and stomach pain returned, he lost his appetite and, worse still, intense pain developed in his legs that severely limited his mobility. Jay explains, “My legs ached so much that it got to the point where I couldn’t walk and had to crawl round on the floor. I struggled to get up the stairs and had to haul myself up on the doorframe to be able to stand up long enough to go to the toilet and, even then, my legs would shake like jelly.”
Since the end of January 2023, Jay has been receiving home visits from a private paediatric physiotherapist who gives him gentle muscle exercises to do. He has tried using a walking frame, but can only manage up to 10 steps at a time. A mobility scooter also helps, giving him the opportunity to move around the ground floor and get fresh air in the back garden, but he still doesn’t know when he might be able to walk properly again.
Not surprisingly, all of this leaves Jay somewhat depressed and frustrated. “I’m feeling annoyed and really sad because I can't do all the things I used to be able to do,” he tells us. “And the doctors have not been able to help me much, because they simply don’t understand my condition.”
Where Jay is now
Jay describes what his life is like after 14 months of being ill. “On a normal day, I wake up, usually after an interrupted sleep, and sit on the bed for a while before finding the energy to get up. Getting dressed takes a lot of effort and my mum and dad have to help me. And I have no appetite. Mum has to make me eat, so I'll eat something small, like toast.”
He continues, “During the day, I might do some schoolwork or physiotherapy, but I can’t manage both on the same day. Any activity I do has to be in 15-minute bursts; otherwise I crash out from exhaustion. Mum helps me with my schoolwork and has to really explain things, because I have problems processing information. I spend a lot of time lying on the sofa now as I just don’t have the energy to move very far around the house.”
Although Jay is now housebound, the family’s many pets provide some comfort. Neera believes the animals support his mental health. “Having pets has helped Jay greatly. When he is lying on the sofa, the pugs snuggle up to him and whenever he tries to walk using his walking frame they join him. He loves just lying next to them and stroking them. He also likes taking the lizard and hamster out of their cages to play on his lap.”
Neera is surprised by and very proud of how well Jay has coped with such a drastic and difficult change in his life. She notes the resilience he has shown after such a long time being ill.
The whole family affected With Jay effectively disabled, restrictions have now been put on the whole family. “We used to be a really active family, going to the theatre, going out together for Sunday roasts, walking the dogs – but we’ve had to cancel so much at the last minute because Jay just doesn’t have the energy to go out to do those things,” Neera says.
“Life is now just about work and being at home to look after Jay and to arrange physio and osteopath appointments. It’s affected all of us. The support we’ve received from the patient group Long COVID Kids has been invaluable, though. It's been a relief to connect with other parents who have children in similar circumstances and to find out more information about the condition.”
The shadow pandemic Of those infected by SARS-CoV-2, the virus that causes COVID-19, 1 in 10 will go on to develop long COVID, defined as the continuation or development of new symptoms 3 months after the initial infection, with these symptoms lasting for at least 2 months with no other explanation.
Long Covid can develop in people of all ages, regardless of severity of original symptoms. It is also known that the chance of developing the condition increases the more times a person gets reinfected by the SARS-CoV-2 virus.
The United Kingdom’s Office of National Statistics estimates that 1.9 million people (equivalent to 2.9% of the country's population) were experiencing self-reported long COVID symptoms as of 5 March 2023.
We still have so much more to learn about long COVID and in particular how it presents in children, which is why WHO/Europe, in partnership with Long COVID Europe, is calling for Member States to increase the 3 Rs – recognition, research and rehabilitation – for post COVID-19 condition (long COVID).
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