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October 26, 2020

What it's like to be a Covid-19 'long-hauler'—at just 12 years old

Daily Briefing

    Although Covid-19 can be a mild and quick disease for some, many patients experience symptoms for months after their diagnosis. And although children tend to be less affected by the disease than adults, they're not immune to becoming Covid-19 "long-haulers," David Tuller reports for the New York Times.

    Recovery clinics for Covid-19 long-haulers

    Meet Maggie Flannery, a 12-year-old Covid-19 'long-hauler'

    Take Maggie Flannery, for instance. Maggie, age 12, and her parents all tested positive for the novel coronavirus in early March. After three weeks, it appeared as if all three had recovered from the disease, Tuller reports.

    However, Maggie later relapsed, Tuller notes.

    "It felt like an elephant sitting on my chest," Maggie told Tuller. "It was hard to take a deep breath. I was nauseous all the time, I didn't want to eat, I was very light-headed when I stood up or even just lying down."

    Initially, specialists thought Maggie's symptoms could be psychological, especially since she didn't show any signs of damage to her heart or lungs and she tested negative for the coronavirus and antibodies to the virus. However, as Tuller reports, Maggie became ill during a time when the United States was experiencing testing shortages, and "viral tests taken long after the initial infection are generally negative." In addition, Tuller notes, "antibody tests are frequently inaccurate."

    "They didn't know anything about 'long-Covid' at that point," Amy Wilson, Maggie's mother, said. "They said it was anxiety. I was pretty sure that wasn't true."

    Since then, Amy DeMattia, Maggie's pediatrician, has confirmed that Maggie had Covid-19, based on her clinical history and her parents' diagnoses.

    Maggie has been forced to limit what she does each day since her diagnosis, Tuller reports. She attends socially distanced classes at her school, but she doesn't walk the 15 blocks there and back. Maggie also has difficulty concentrating, which means her homework takes more time to complete. She's also stopped attending ballet classes, which she used to do four times a week before America's coronavirus epidemic took hold.

    Although Maggie said she's started to feel better over time, she noted, "[s]ome days are a lot better than others."

    "If I do too much on the good days, I feel a lot worse on the next day or next couple of days, and some days I can't do anything if it's a bad day," Maggie said.

    Meet Ava McKinney-Taylor, a 14-year-old Covid-19 'long-hauler'

    Ava McKinney-Taylor, a 14-year-old, similarly got sick with Covid-19 symptoms in March and eventually tested negative for the coronavirus and antibodies. Her doctors also initially thought that her exhaustion was psychological, Tuller reports. According to Tuller, Ava's doctors thought the symptom was due to the stress of living in quarantine—a notion that Ava thought was "ridiculous."

    "Like, 'You're just not getting to do your normal activities,'" Ava recalled her doctors saying. "I'm a very active person, this couldn't just be, 'Oh, I'm sad that my friends are gone,'" she said.

    Ava's mother, Ziah McKinney-Taylor, said since Ava first got sick, she "has never really gotten her energy back, she is always sleeping and napping."

    Ava said it can be hard to keep her spirits up as she deals with her symptoms and not knowing whether or when she'll recover. "It's a little hard to have hope right now," she said. "We don't know if this will be a lifelong thing, if this will last a year, or two years or five years. So the future is not looking too bright for me personally."

    Meet Chris Wilhelm, a 19-year-old Covid-19 'long-hauler'

    Chris Wilhelm, 19, got sick with Covid-19 symptoms in June and tested positive for the coronavirus, along with his parents. His parents got better, but Chris has lingering symptoms.

    Initially, doctors told Chris that his symptoms would eventually go away. "For a while it was just, 'We need to wait a bit longer, it will just get better with time,'" he said. "Everyone was giving me this magic number, like the 12-week mark is when all your respiratory issues are supposed to go away."

    However, Chris said, "We hit that weeks ago, and there's really not any improvement."

    Eventually, Peter Rowe, a professor of pediatrics at Johns Hopkins who specializes in debilitating and chronic conditions such as myalgic encephalomyelitis/chronic fatigue syndrome (ME/FS), determined that Chris has postural orthostatic tachycardia syndrome, a heart-racing condition that can be prompted by viral infections. The condition can limit a patient's ability to do day-to-day tasks, and it "has no approved drug treatments," Tuller reports.

    Chris "had been capable of training 60 and 70 miles a week as a runner," but Chris has experienced some "really severe impairment" that are characteristic of ME/FS, Rowe said.

    A need for more research

    Currently, not much is known about how Covid-19 impacts adults in the long-term—much less children—according to Richard Besser, a pediatrician and CEO of the Robert Wood Johnson Foundation. And "[w]ith schools reopening, we're likely to see more infections in children," Besser said. "We need to make sure we're doing the studies to understand the short, medium, and long-term effects."

    Melissa Trovato, interim medical director of rehabilitation for the Kennedy Krieger Institute, said the institute has seen just one patient under 21 who's had long-term Covid-19 symptoms, but she thinks it's "quite possible" that the institute could see more young patients with lingering symptoms in the future.

    However, she said, "[i]t might take more time for family to pick up on it," because Covid-19 typically is milder in children than it is among older people. Still, "[f]rom a pediatric perspective there probably is more that we're going to find out, as more children" with "prolonged symptoms come forward and get seen," Trovato said (Tuller, "Well," New York Times, 10/22).

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