‘I didn’t have the energy to move my arms’: Teenagers struggling with long Covid

Will Grogan stared blankly at his biology classwork. It was material he had mastered the day before, but it looked utterly unfamiliar.

“I don’t know what you’re talking about,” he blurted. His teacher and classmates reminded him how adeptly he’d answered questions about the topic during the previous class. “I’ve never seen this before,” he insisted, becoming so distressed that the teacher excused him to visit the school nurse.

The episode, earlier this year, was one of numerous cognitive mix-ups that plagued 15-year-old Will, after he contracted the coronavirus in October, along with issues like fatigue and severe leg pain.

As young people prepare to return to school in many places across the world, some are struggling to recover from lingering post-covid neurological, physical or psychiatric symptoms. Often called “long covid,” the symptoms and their duration vary, as does the severity.

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Studies estimate long covid may affect between 10 per cent and 30 per cent of adults infected with the coronavirus. Estimates from the handful of studies of children so far range widely. In April, Dr Francis Collins, director of the National Institutes of Health in America, cited one study suggesting that between 11 per cent and 15 per cent of infected youths might "end up with this long-term consequence, which can be pretty devastating in terms of things like school performance".

Brain fog caused him to see "numbers floating off the page" in math

Doctors say even youths with mild or asymptomatic initial infections may experience long covid – confounding, sometimes debilitating issues that disrupt their schooling, sleep, extracurricular activities and other aspects of life. "The potential impact is huge," said Dr Avindra Nath, chief of infections of the nervous system at the National Institute of Neurological Disorders and Stroke in the US. "I mean, they're in their formative years. Once you start falling behind, it's very hard because the kids lose their own self-confidence too. It's a downward spiral."

Will, a scout, a talented tennis player and a highly motivated student who loves studying languages so much that he takes both French and Arabic, said he used to feel “taking naps is a waste of sunlight.”

But covid made him so fatigued that he could barely leave his bed for 35 days, and he was so dizzy that he had to sit to keep from fainting in the shower. When he returned to his classes, brain fog caused him to see “numbers floating off the page” in math, to forget to turn in a history paper on Japanese Samurai he’d written days earlier and to insert fragments of French into an English assignment.

“I handed it to my teacher, and she was like ‘Will, is this your scratch notes?’” said Will, adding that he worried: “Am I going to be able to be a good student ever again? Because this is really scary.”

At Boston Children’s Hospital, where a program draws long covid patients from across the country, “we’re seeing things like fatigue, headaches, brain fog, memory and concentration difficulties, sleep disturbances, ongoing change in smell and taste,” said Dr Molly Wilson-Murphy, a neuroinfectious diseases specialist there. She said most patients were “kids who had covid and weren’t hospitalised, recovered at home, and then they have symptoms that just never go away – or they seem to get totally better and then a couple of weeks or a month or so after, they develop symptoms.

“We don’t yet have any sort of good predictors of who will be affected, how much they’ll be affected and how quickly they’ll recover. We don’t have any sort of magic treatment.”

Much about long covid remains mysterious. Some symptoms resemble aftereffects of concussions and other brain injuries. Some, such as post-exertional malaise – when physical or mental exertion increases exhaustion – echo symptoms of chronic fatigue syndrome, experts say.

Some patients develop Postural Orthostatic Tachycardia Syndrome, or POTS, which involves lightheadedness and racing heart rates upon standing up. Some studies report higher proportions of older children with long-term issues. That might be because adolescents find some symptoms more disruptive or because after puberty, hormones might amplify immune responses, Nath said.

An April study by the UK's Office for National Statistics found that 9.8 per cent of 2-11-year-olds and 13 per cent of 12-16-year-olds infected with the coronavirus reported continuing symptoms five weeks later. After 12 weeks, rates remained significant – 7.4 per cent in the younger group and 8.2 per cent in the older group.

In another UK study, 4.4 per cent of 1,734 children had symptoms more than four weeks post-covid, over four times as high as the percentage with symptoms four weeks after non-covid illnesses such as flu. About 2 per cent of covid patients had symptoms after eight weeks.

Many young patients were previously healthy, said Dr Laura Malone, co-director of Kennedy Krieger's program. Some doctors have seen some youths with long covid who had previous issues like migraines or anxiety, but it's unclear whether there's any connection.

Fatigue, headaches, forgetfulness

Before the pandemic, Sierra Trudeau was diagnosed with anxiety after her parents' divorce, said her mother, Heather Trudeau. In May, six months after contracting the coronavirus, Sierra's long covid symptoms remained worrisome enough to make a 50-mile trip to Boston Children's Hospital.

In an interview this spring, Sierra (12) and her mother described Sierra’s fatigue, headaches, forgetfulness and other symptoms. Her mother asked Sierra: “Do you feel like it’s been worse for your anxiety, and like your mental health, like your emotions?”

“Yeah,” Sierra said softly.

“Everything makes her cry and that is not her,” Trudeau said. “It’s just been so hard.”

During that May appointment, Dr Jane Newburger, a vice chair of cardiology, told Sierra: "Part of what can happen is you feel rotten and so, you know, you sit all day. You get deconditioned, and you get into a little bit of a cycle where it's hard to pull out."

Still, Newburger said, “You can’t throw someone back into exercise because you’ll take one step forward and two backward.”

She said examinations of Sierra’s heart and other tests showed no notable physiological problems, similar to many post-covid paediatric patients.

Nath said some issues might be caused by inflammation that damages blood vessels, including in the brain. He said another theory was that “the immune system somehow gets deranged and then it’s hard to shut down,” or that residual virus or genetic fragments keep immune responses activated. “It’s like the song is gone, but the music lingers on,” he said.

'It was as if I'd been hit by a train or run a marathon'

One optimistic sign for Sierra was that her smell and taste returned this spring. In late July, Trudeau said Sierra’s symptoms had improved, partly because of new antidepressant and anti-anxiety medications, although “her energy level still varies from day to day.”

What is happening to me?

It took Niamh 20 minutes to wash her face – and she cried the whole time. That was in December, 2020, when the 19-year-old first-year student at the University of Leeds had been living with long covid for two months. “I didn’t have the energy to move my arms,” she says. She remembers sitting on the toilet, trying to muster the strength to stand up and run the tap. It took all her energy just to switch on the water. “It sounds daft, but I cried,” she says. “I was like, what is happening to me?”

Niamh had led a physically active life until then. She went to the gym regularly and had swum competitively at school. But after catching covid in freshers’ week, she became a shell of her former self. She would wake up in the morning and feel overwhelmed by a tiredness that felt as if it was deep in her bones. “I have never felt fatigue like it,” she says. “It was as if I’d been hit by a train or run a marathon.” Gentle activities, such as taking a walk with friends, would leave her gasping for breath.

She couldn’t smell or taste anything. She had chest pains and palpitations. Mostly, she lay in bed, scrolling through social media and trying to ignore the thought that she was missing out on the student experience she had longed for.

For most of the next year, well into May, the symptoms persisted. Her senses of taste and smell returned to an extent, but Niamh survived on bland foods – potato waffles, vanilla protein powder – because everything else tasted foul. She would faint, or nearly faint, at least twice a month. An outing for her birthday in May ended when she collapsed on the bathroom floor. Doctors told her that she had developed a heart condition, most likely due to covid, and might need a pacemaker eventually. Today, Niamh still faints and has palpitations, struggles with low energy and can’t smell or taste as she did.

“When I stand up, even slowly, it feels like I might collapse,” she says. “I ask myself, why can’t I be like everyone else? Why did this happen to me?”

Niamh is one of the estimated 106,000 under-25s living with long covid in the UK. (Of these young people, 72,000 are 17-24 and 34,000 are under 16.)

"We can definitely say that children get long covid," says Dr Elaine Maxwell of the National Institute for Health Research in the UK. "But the problem with long covid is that it's not one definition."

Common symptoms of long covid include sensory problems, such as loss of smell and taste, brain fog and cardiac-respiratory symptoms. But children tend to have slightly different symptoms – a recent study of two million insurance claims from the US organisation Fair Health found that under-18s were more likely to report intestinal issues and “adjustment disorders” (emotional or behavioural reactions to stressful life events).

Due to this divergence, these symptoms are sometimes treated with scepticism.

“We are still at the stage where some people are saying that children don’t have long covid,” says Dr Maxwell. “Is it just anxiety? Anxious parents?”

This disbelief can extend to teachers, social workers and even medical professionals, compounding the stress and uncertainty of life as a teen with long covid. (People with similar syndromes, such as chronic fatigue, often report being dismissed by healthcare workers.)

"People are being minimised and not believed," says Sammie Mcfarland of Long Covid Kids (an advocacy and support group), ranging in age from seven months to 18 years. Mcfarland set up the support group after her 15-year-old daughter Kitty got long covid in the spring of 2020. At a medical appointment that autumn, Mcfarland – who also has long covid – mentioned Kitty's condition to a nurse. "She told me that my daughter was mimicking my symptoms and it was related to lockdown, and she would feel better when she saw her friends again," Mcfarland says.

Dr Danilo Buonsenso, from the women and children's department at the Gemelli University hospital in Rome, says: "Long covid is more accepted in adults than in children because there is still this dominant narrative that it is mainly psychological." Dr Buonsenso talks about a 14-year-old girl he treated. Other doctors had determined that her condition was psychological. After running advanced, non-routine tests, Dr Buonsenso found that she had lung perfusion problems (her lungs were not oxygenating properly), chronic inflammation and cardiac pulmonary issues.

“Long covid is much more rare in children, which is good news,” he says. “But it’s still real.” – New York Times & Guardian