What does long covid treatment look like for kids? Too few clinics are trying to figure it out.

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.”

Less common, but still real

Early estimates of the number of kids with long covid ranged wildly, from 4 to 66 percent of kids who get infected with the virus. That’s in part due to gaps in government data and the fact that scientists don’t agree on what long covid is.

“Definitions of long covid vary a lot and can be vague and indistinct from other things,” said Stephen Freedman, professor of pediatrics at the University of Calgary. Fatigue, headaches, difficulty concentrating, mood swings and abdominal pain are some of the more common long covid symptoms in kids, research suggests. The overlap these symptoms share with many other conditions has made pinning down who has long covid challenging.

Newer studies that compare kids who got covid and those who didn’t provide a bit more clarity. A July analysis of nearly 1,900 kids across eight countries by Freedman and colleagues found that 9.8 percent of kids who were hospitalized with covid and 4.6 percent of infected but non-hospitalized children reported experiencing some symptoms 90 days after a positive test result. Just 2.7 percent of non-hospitalized kids without covid did.

“Almost all of the studies seem to find somewhat higher risk of having symptoms in children who have been infected with covid, compared to those who have not,” said Freedman. He and his colleagues found that kids with more symptoms initially, as well as those who were older, were at slightly higher risk of long covid. “Biologically that makes sense,” he said. “If you’re more severely affected in the acute phase, then you may be more likely to have symptoms later on.”

Still, even kids with mild infections can have symptoms emerge months later.

Lucas Denault’s bout with covid barely registered on his radar. “I felt a little fatigued with a stuffy nose for like 12 hours,” said the Gettysburg, Pennsylvania, 17-year-old, who tested positive in January 2021. “But after a night’s rest, I was completely healthy. I had the most mild case of covid I think you can experience.”

A few weeks later, in March, he started experiencing strange symptoms during track practice.

“I was working out like three hours a day, but slowly I couldn’t finish my weightlifting routine without getting super nauseous,” he said. Soon, the sprinter couldn’t run half a lap without getting the same feeling. By mid-April, Lucas was pretty much bedridden.

“Nausea, dizziness, fatigue, brain fog, headaches, tremors, problems with temperature regulation,” he said. “My feet and fingers were like icicles, at that point I’d roll over in bed and get nauseous.”

Initially, he didn’t think to connect what he was experiencing with covid. “It was confusing, because I had covid for such a minimal time with minimal symptoms,” he said.

He first sought help from a pediatrician, who referred him to a pediatric cardiologist on the suspicion it might be covid-related myocarditis. “But they didn’t find anything and said he was fine,” said Karin Denault, Lucas’ mother. “We walked out the door very upset. It’s pretty terrible as a mom to watch this happen to your healthy, bright happy child who couldn’t get out of bed and walk down the hallway without getting sick.”

It wasn’t until Lucas went to the Kennedy Krieger Institute’s pediatric post-covid rehabilitation clinic in Baltimore that he started finding answers.

Integrated, interdisciplinary clinics

Long covid is new — but taking an interdisciplinary approach to helping patients with complex conditions or diseases is not. It’s often used in rehabilitation programs for people with brain injuries, and interdisciplinary cancer centers have been shown to improve the quality of care.

“Long covid is a multidisciplinary disease. It can involve a lot of different organ systems and different levels of severity,” said Daniel Blatt, an infectious disease physician at the post-covid clinic at Norton Children’s Hospital in Louisville, Kentucky. “The only way to take care of kids like that is to have a robust system in place that allows for a lot of time dedicated to the care of these children. Without that, kids will fall through the cracks. They will suffer at home, at school, and could have a long-term educational deficit because of that.”

Different pediatric long covid clinics have different models. At Norton, the core team is made up of pediatric infectious-disease specialists who spend at least an hour with new patients taking their histories. “We’ll sometimes go back years with their symptoms to get a really good sense of what’s underlying them and rule out other potential causes,” said Blatt.

They then refer patients out to specialists — neurologists, pulmonologists, cardiologists and others, as needed — who have agreed to see patients quickly, and then the clinic continues to follow up. “We don’t have a novel long covid medication,” he said, “but we can spend the time with these patients that maybe their primary care doctor can’t and make a specialized plan.”

By contrast, Children’s National Hospital brings in more specialists at the outset, which immediately put Christina Macken at ease.

Her daughter, Frankie, caught covid last fall, during kindergarten. About a month after she tested positive, Frankie started getting bad headaches when trying to concentrate and having mood swings. Working through simple problems, like copying letters, “she’d burst into tears [and say], ‘I can’t do this, my brain is exhausted, I don’t know how to get it done,’” said Macken.

As months passed, Frankie developed other symptoms, like trouble sleeping, gastrointestinal issues and temperature dysregulation. (“It’d be 85 degrees out and she’d have on four layers,” said Macken.) And her eczema, which was mild to moderate, became extreme.

Suspecting long covid, Frankie’s pediatrician referred her to the Children’s National Hospital, where she spent several hours being seen by a team of specialists who discussed her case between appointments in that cramped, windowless room.

Through those discussions, a plan emerged — get the eczema, which could be exacerbating the sleep problems — under control with a dermatologist. See a neurologist for headaches, a gastroenterologist and cardiologist to rule out other conditions that might be causing some symptoms, and work with Frankie to pace her activity to prevent the extreme fatigue known as post-exertional malaise that affects some people with long covid.

“Kids can feel great one day and spend all their energy and then be laid out for a week,” said Yonts. “We try to gradually increase activity, both cognitive and physical, with very close attention paid to post-exertional symptom exacerbation,” helping kids find the maximum level of activity they can handle without crashing, Yonts said.

That’s changed the structure of Frankie’s days. “The most important things come first,” said Macken, who has been homeschooling Frankie this year, in part because she doesn’t want her to catch covid again. “Sometimes it’s doing something like a math problem for two minutes, and she’ll need 15 minutes to let her brain come back,” she said.

There are still plenty of rough days. “But knowing there’s this team of people with eyes on her really helps,” Macken said. “It feels good to be in a structured program, we’re not just playing Whac-A-Mole.”

The Children’s National Hospital, which is affiliated with the National Institutes of Health’s long covid research program, is also testing out some newer ideas. It’s recently started screening some patients for signs of micro clots in the blood, for example, which research suggests may cause some long covid symptoms.

That kind of kid-centered research is crucial to developing new treatments, said Laura Malone, a physician scientist at the Kennedy Krieger Institute’s pediatric long covid clinic. “Children have a developing brain,” she said, and immune systems that work differently than those of adults. “We may need to do treatments differently, so we need to also do research studies in children and not just rely on adult-based information.”

Most kids do improve, but the road can be long and bumpy

When Lucas arrived at Kennedy Krieger Institute’s clinic in April 2021, the high school athlete couldn’t run more than a lap without getting intensely nauseated and was in bed, Zooming into class.

Doctors there suspected his symptoms were caused by postural orthostatic tachycardia syndrome, or POTS, a wide-ranging disorder in which the body struggles to regulate heart rate and blood pressure.

There’s no cure, but POTS can be managed with different medications and therapies. Lucas cycled through different treatments, including aquatic therapy, for a year full of frustrating cycles of progress and setbacks. “I’d get home [from school] and just crash,” he said. “I didn’t see a lot of friends. It was difficult.”

In July, his doctors at Kennedy Krieger Institute suggested he try a more intensive neurorehabilitation program there. During some standard tests of balance, a physical therapist realized that Lucas’ left eye wasn’t functioning properly. “My vestibular system was way out of whack, and they thought that might be causing my symptoms,” he said. Covid infection can cause visual-vestibular impairments, and his therapists started working with him to train his eyes to work together.

“Figuring this out was revolutionary,” he said. Since starting this therapy, he’s gone from being barely able to walk for more than 10 minutes to doing “things I wouldn’t even imagine being able to do six months ago,” he said, like playing in a basketball game.

“The thing with long covid is that it’s a fricken process,” said Lucas. “It’s slow and steady wins the race, and you’re gonna have more defeats than victories, but it can get better.”

That sentiment is shared by many clinicians working at the country’s scattered pediatric long covid clinics.

“The promising thing is that most of these kids do seem to get better over time,” said Yonts. “Not all are back to where they were before, but things can definitely improve,” she said. But that type of intensive, multidisciplinary care is out of reach of many U.S. kids with long covid — and the virus isn’t going away.

“One of the biggest things that would help is more outreach to primary care providers, so they’re aware of long covid and can give kids some basic pacing strategies,” Yonts said. Expanding online support groups would also address the isolation and depression many children with long covid can feel.

For many of the kids and families who’ve spent months trying to find a way back to a life that’s been lost, simply having a framework for navigating what they’re going through, and validation that it’s a real thing many struggle with, is the most impactful part of their experience at a clinic.

“I try to reassure kids by saying, ‘Hey, I know you’re the only one in your school or your town who is going through this, but you’re not alone and you’re not crazy,” she said. “It sucks, and I’m sorry you have to go through this — you shouldn’t have to at this important time in your life. But believe me, you will get back to a place where you can be happy again, where you can do what you want to do,” she said. “You just have to wait out the process.”

Thanks to Alicia Benjamin for copy editing this article.