Will Grogan stared blankly at his ninth grade 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 Will, 15, after he contracted the coronavirus in October, along with issues including fatigue and severe leg pain.
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As young people across the country are returning to school, many 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.
Studies estimate long COVID may affect between 10% and 30% of adults infected with the coronavirus. Estimates from the handful of studies of children so far range widely. At an April congressional hearing, Dr. Francis Collins, director of the National Institutes of Health, cited one study suggesting that between 11% and 15% of infected youths might “end up with this long-term consequence, which can be pretty devastating in terms of things like school performance.”
The challenges facing young patients come as pediatric COVID-19 cases rise sharply, driven by the highly contagious delta variant and the fact that well under half of 12- to 17-year-olds are fully vaccinated and children under 12 are still ineligible for vaccines.
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. “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, an Eagle Scout, a talented tennis player and a highly motivated student who loves studying languages so much that he takes French and Arabic, said he used to feel “taking naps is a waste of sunlight.”
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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 Dallas high school 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.”
‘We don’t have any sort of magic treatment’
Nearly 4.2 million young people in the United States have had COVID-19, according to the American Academy of Pediatrics. Relatively small percentages have been hospitalized for initial infections or developed a condition called Multisystem Inflammatory Syndrome in Children (MIS-C) that can emerge several weeks later. Doctors expect considerably more will experience long COVID.
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 hospitalized, 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.”
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Dr. Amanda Morrow, co-director of the pediatric post-COVID-19 clinic at the Kennedy Krieger Institute in Baltimore, said getting treatment early might help recovery. Post-COVID clinics find they need multiple specialists and approaches including exercise, cognitive behavioral therapy, sleep modification and medication for issues such as respiratory and gastrointestinal problems.
“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,” Wilson-Murphy said. “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, including 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 United Kingdom’s Office for National Statistics found that 9.8% of 2- to 11-year-olds and 13% of 12- to 16-year-olds infected with the coronavirus reported continuing symptoms five weeks later. After 12 weeks, rates remained significant: 7.4% in the younger group and 8.2% in the older group.
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In another U.K. study, 4.4% 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% 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 such as migraines or anxiety, but it’s unclear whether there’s any connection.
‘Nothing like that has ever happened to me’
“Dang, why am I always so sick?” Messiah Rodriguez, 17, asked himself. Before getting COVID around Thanksgiving, he never had health problems, he and his mother, Kimmie Ezeike, said.
An energetic point guard and shooting guard on school and travel basketball teams, Messiah had to stop playing after running off the court and vomiting in his backpack during two games.
“Nothing like that has ever happened to me, and I’ve been playing sports my whole life,” he said. He tried basketball again recently, but experienced back pain and an orthopedist advised him to take another break.
“Messiah is probably one of the more affected kids I’ve seen,” said Dr. Alexandra Yonts, director of the COVID-19 Longitudinal Care Clinic at Children’s National Hospital in Washington, D.C.
Eight months later, some of Messiah’s symptoms have eased. Others, such as shortness of breath while climbing stairs, linger, his mother said.
In classes, Messiah, an honors student, said “my mind would kind of feel like it was going somewhere else.”
In a June appointment at Children’s National that the Times observed, Dr. Abigail Bosk, a rheumatologist, told him his post-COVID fatigue was more debilitating than simple tiredness. His athleticism, she said, should help recovery, but “it’s really not something you can push through.”
Yonts said Messiah’s treatment plan, including physical therapy, resembles concussion treatment. For the summer, she recommended “trying to give his brain a break, but also slowly build up the stamina for learning and thinking again.”
Messiah has maintained at least two hobbies: playing piano and writing poetry.
“I don’t want to float my boat, but I feel like I’m a pretty good writer,” he said. “I can still write. It’s just sometimes I’ve got to think harder than I usually had to.”
‘A feeling of helplessness’
“The scariest part,” said Will, the Dallas teenager, was visiting doctors whose “answers were: ‘Hey, bud, take it easy. Go rest.’ I couldn’t blame them. That’s all they could tell me really.”
Will and his family persisted, though.
“It’s so unknown, and it’s such a feeling of helplessness as a parent,” his mother, Whitney Grogan, said.
With some relaxed homework and testing requirements, Will maintained high grades. About six months post-infection, he made the varsity tennis team, but his typically excellent hand-eye coordination was off.
“I would just miss the ball completely,” he said. “And I’d be like, ‘Whoa, come on Will, what is happening?’”
His chest and left leg hurting, he visited Dr. Kathleen Bell, chair of physical medicine and rehabilitation at UT Southwestern Medical Center. She recommended pushing enough but not too much. “We had to drag him back from over-practicing tennis,” she said.
Eventually, he played matches. His symptoms have largely improved, but he’s not yet 100% recovered.
“I’m not really a dramatic guy, but it’s turned me into much more of a worrier,” Will said. “My idea of COVID before I got it was, ‘You know what, if I get it, I’ll get it over with and I’ll have the antibodies and I’ll be good.’ But oh, my gosh, I just never want to go through that again. Never.”
This article originally appeared in The New York Times.
