Article By: Natasha Hinde
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His case might seem unique, but it is thought Thomas is one of hundreds of children in the UK who are still not back to full health after having Covid.
“He’s like a six-year-old in a 90-year-old’s body,†says Chris Ward of his son Thomas, who first fell ill last February with a fever, breathlessness and aches all over his body.
Thomas was assessed at A&E where the family was asked if they’d been to Italy – they hadn’t. They were sent home with instructions that it was a viral infection and Thomas, then five, needed to rest.
Flash forward almost a year and Thomas is still suffering – tests have since revealed he has Covid-19 antibodies. Every two or three weeks, his temperature soars. His glands are constantly enlarged and his body aches most days. Ward recently caught him walking up the stairs like a crab because of the pain.
Thomas has been given the “likely diagnosis†of long Covid by paediatricians at the Royal Manchester Children’s Hospital. “He’s the first child they’ve seen with symptoms lasting so long and the first child they’ve given this diagnosis to.â€
His case might seem unique, but it is thought Thomas is one of hundreds of children in the UK who are still not back to full health after having Covid.
Parents have told HuffPost UK they feel helpless at how much their children’s lives have been disrupted by common long-term symptoms such as fatigue, body aches and headaches – among many other debilitating symptoms.
Long Covid describes signs and symptoms that continue or develop after acute Covid-19, according to guidance from the National Institute for Health and Care Excellence (NICE). The issue is not widely recognised in children.
It’s been a drawn-out fight by campaigners to get the issue acknowledged in adults, which resulted in clinics being opened in the UK throughout 2020. Now, parents are fighting for the plight of their children to be recognised, too.
Layla Moran, an MP and chair of the All-Party Parliamentary Group on Coronavirus, recently addressed the plight of parents and children with long Covid in a House of Commons debate on the topic. Evidence of children suffering with long Covid is building and robust research is needed, she said.
Moran says long Covid is the “hidden health crisis†of the pandemic. “We know long Covid affects kids too, but the way in which it affects children is even less understood than how it affects adults,†she tells HuffPost UK. “Government needs to start understanding the effects of long Covid in kids, particularly because it needs to count long Covid when considering reopening schools.â€
It’s not clear how many children are struggling with long-term symptoms. This data hasn’t been collected and often, it’s impossible to say whether some children had Covid, as tests weren’t widely available when many became ill.
Data estimates from the Office for National Statistics (ONS) suggest five weeks after testing positive for Covid-19, 15% of secondary school children and 13% of under-12s are still struggling with symptoms.
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In a bid to raise awareness of the impact the virus can have on children, parents whose children are suffering with long-term symptoms have joined forces to form an action group: Long Covid Kids.
The group includes some 600 families, says co-founder Sammie McFarland, 44, from Dorset – representing roughly 800 children, including children from Black, Asian and minority ethnic backgrounds. Not one child has recovered to full health since first becoming ill, she tells HuffPost UK.
An informal survey of parents in the group found children affected were most commonly experiencing fatigue, sore throat, gastrointestinal issues, headaches, muscle pain, and weakness months after first becoming sick.
Yet parents reported experiencing “medical gaslightingâ€, says McFarland, where they have been told by doctors that their kids have anxiety or that Covid doesn’t affect children. Others are simply frustrated nobody can help – an experience shared by parents in the US, too.
McFarland started the group with Frances Simpson, 42, from North Yorkshire. The mothers were united by their feeling of hopelessness when their children weren’t recovering. They were determined to take action and find other families impacted to prove it was not something they had made up.
McFarland and her daughter Kitty, then 14, both fell ill in March 2020. At first, McFarland struggled with a sore throat and headache that wasn’t going away – she had isolated, however as the 14 days were coming to an end, she heard her daughter coughing in the shower and decided to lock the family down.
Since then her daughter, now 15, has experienced many symptoms: heart pain, dizziness, fainting, feeling weak, anxiety, high temperature, muscle twitches, fatigue, back and neck pain, headaches, heavy eyes, visual disturbances, insomnia, menstrual cycle changes, and loss of smell.
These symptoms come in clusters – but the fainting, dizziness and weakness have been constant. Having long Covid has impacted Kitty’s mental health, particularly the isolation from not being able to take part in normal activities. When schools returned in September, Kitty still wasn’t well enough to go back.
Kitty has struggled with the fact medical professionals don’t know how to help her. The family saw a consultant in October and Kitty pinned her hopes on a potential treatment – but they had no answers. “She came away bereft from that appointment,†says McFarland. “Her one chance of getting better, as she saw it, was taken away – the person she wanted answers from had no answers.â€
The 44-year-old says it’s been “harrowing†to watch her daughter struggle from the sidelines and not be able to help. “At no point in my parenting career have I not been able to give my child a solution. But to have my child ask: ‘when will I get better?’ and not be able to give them a response is really difficult.â€
More recently, Kitty’s health has begun to improve. Where once she was spending most days in bed, she can now be out of bed for nearly half a day, her mum says. It has come as a relief to the family after so much uncertainty.
Frances Simpson and her two children have been dealing with suspected long Covid since March 2020. Simpson, a university lecturer, was the first in their household to come down with symptoms.
Her son Magnus, who was five at the time, developed a cough and started complaining of testicle pain. His older sister Saskia, nine, developed a sore throat, earache, and high temperature. “I thought: it can’t be the same thing,†says Simpson. “But it was too coincidental for it not to be the same thing.â€
As the weeks progressed, Saskia started feeling faint and dizzy – she could barely eat. Magnus would be fine and then a few days later, would say he couldn’t see properly, or that he felt sick. The nausea and sickness has gone on for 10 months in both children – and to this day, Saskia is unable to eat properly, sometimes living off milkshakes.
“It’s been awful,†says Simpson. “Even just talking about it and remembering the early stages, I can feel the anxiety coming back again.â€