What Does Long Covid Treatment Look Like For Kids? Too Few Clinics Are Trying To Figure It Out


Bree Linville; blackred/ GeoffBlack/ smartstock/ petrovv/ kokouu/ Hispanolistic/ Getty Images

Inside a cramped, windowless room at Children’s National Hospital in Washington, D.C., a special team of clinicians gathers every Wednesday to help kids struggling with long covid.

The cases are complex, varied and heartbreaking. Once-active children now struggle to walk more than 50 feet. Some are so tired they sleep for 20 hours a day. Others have had to withdraw from school because virus-induced brain fog clouds their ability to solve simple math problems. The one thing they have in common is a covid infection.

The Centers for Disease Control and Prevention estimates there were roughly 26 million cases of covid among people under 18 during the first 20 months of the pandemic. But just how many kids are dealing with long covid is hard to pin down. The condition seems to be less common in children than in adults; one international study put the risk at nearly 6 percent.

But the sheer number of initial infections in kids means that many likely face lingering symptoms — yet few areas have facilities equipped to offer adequate care. That leaves many families, especially those with lower incomes or outside of major metro areas, to figure it all out themselves.

“It’s hard for kids. Their peers often don’t understand because they look normal,” said Alexandra Yonts, an infectious disease specialist at Children’s National Hospital, which sees three new patients a week and is booked through June 2023. “The parents vocalize a lot of frustration being passed around from doctor to doctor, since there’s still a lot of community physicians that don’t believe that long covid exists in kids, or just don’t know what to do about it.”

But in quick bursts of discussion between appointments, Yonts and her colleagues — in infectious disease, physical medicine, rehabilitation and psychology — hash out what they can do about it. The team decides which blood tests might identify causes of fatigue, weigh whether to bring in a neurologist to help with headaches or rule out other conditions that might diminish concentration.

“It helps that we can all be here talking with each other,” Yonts said. “It cuts down on cross-communication.” This kind of centralized, interdisciplinary care for long covid isn’t a silver bullet — scientists are still scrambling to understand what long covid is and how best to treat it — but it’s the best option for kids dealing with debilitating symptoms that often stump other doctors.

But there are just over a dozen such clinics in the U.S. Many are staffed with clinicians juggling more routine patient care and other responsibilities at the hospital, which limits their capacity and leads to monthslong waitlists.

Families often hit many dead ends before finding their way to dedicated clinics. “It’s pretty draining,” said Monika Varma, whose then-9-year-old son Akshay got covid in December 2021. “He’d get these really difficult headaches any time he was on a screen or tried to read, have temper tantrums and was just exhausted to his core,” she said. “He didn’t have the stamina to do anything.”

For several months Varma scrambled to find the right doctors, bringing Akshay to a pediatrician, neurologist, cardiologist and pulmonologist, some of whom were unfamiliar with long covid. “We were going piecemeal until we got into [Children’s National Hospital], but leaving that clinic we had the biggest sigh of relief,” she said. “You’re there for a long time, and the doctors are all talking to each other. By the end of the day, we knew, yes, this is long covid and had specific areas to focus on.”

Recovery wasn’t smooth or easy, but the tools Akshay got from the clinic — pacing strategies to manage his depleted energy, strategies to ride out mood swings and a neurology referral to help with headaches — have helped him get traction in feeling better. “He does have days where he’ll get really tired, but that’s not the norm anymore,” said Varma. “Knock on wood, I think we’re really on the other end of it.”

“We were very, very lucky that we had the care we had and the time that I was able to devote,” she said. “We were so much luckier than most people.”….Read more

By: Jonathan Lambert Public Health Reporter

Source: Long covid in kids is not common, and difficult to diagnose

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