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A year ago this month, Dr. Alexandra Brugler Yonts opened a clinic with hopes to shutter it quickly.

“When we started, we weren’t sure how long we’d be open—we thought only a couple of months,” says Brugler Yonts, an infectious disease specialist at Children's National Hospital in Washington, D.C.

She’s the head of the hospital’s new Pediatric Post-COVID Program, launched in May of last year to treat children who developed a slew of mysterious symptoms after COVID infection—and those whose symptoms never stopped.

“We were hoping it wouldn’t be forever,” she says of the need for the clinic. “But our optimsm has failed on multiple accounts.”

When it opened, the clinic saw one or two patients a week, or every other week. Now it has 68 patients, and demand is growing.

About a dozen other similar post-COVID clinics for kids exist in the U.S., she says, but some areas lack them. Complicating matters, many have long wait lists.

Some families can’t wait.

“We have had kids come from Florida, North Carolina, Texas,” she says. “Some people call around to all the clinics and ask, ‘How soon can I get in?’”

Not all medical professionals believe that Long COVID exists in kids, meaning that some pediatric patients haven’t been referred for the care they need.

“Even within this population, we’re hearing that some providers still don’t believe Long COVID is a thing in kids, that it’s something they’ll get over eventually, that it’s nothing that requires additional management,” she says.

“It’s an uphill battle.”

An unpredictable ‘crapshoot’

So little is known about Long COVID, a newly emerging post-viral syndrome with a dizzying array of symptoms that could potentially impact over a billion worldwide in just a few years.

Even less is known about the condition in children.

As with adults, it’s currently impossible to say why some develop Long COVID and others don’t.

“It’s a crapshoot in that even very mild or asymptomatic cases can get it,” Brugler Yonts says.

Estimates of how many adults get Long COVID vary widely: Studies have hypothesized that between 5% and 80% of those who’ve had COVID end up with the potentially debilitating condition.

Less is known about its frequency in children, but Brugler Yonts estimates it to be around 5% to 10%. “People are like, ‘Oh, it’s only 5%,’ but we talk about death being 1% and it’s still a big deal,” she says.

At the lower end of that range are kids with “true Long COVID, whatever that means. We’re still figuring it out.”

There are red herrings, including patients who have post-acute sequelae of COVID—lingering symptoms as you might see from a number of viruses—who will likely recover in a matter of weeks.

Some patients whose COVID required hospitalization may have post-intensive care syndrome due to a traumatic and debilitating ICU stay that may have included intubation and prolonged bed confinement. Potential symptoms can include persistent muscle weakness, memory problems, and post-traumatic stress disorder, mimicking some of the more than 200 potential symptoms that have been documented so far.

Of the patients who truly have Long COVID, some simply have long-term effects like direct lung damage. The rest of the patients, she says, likely belong in one or more of four categories: inflammation, dysautonomia, ongoing viral activity, and altered immune response.

Then there is MIS-C, or multisystem inflammatory syndrome in children. These patients fully recover from COVID, if they even had symptoms, and are fine for four to 12 weeks before developing the rare, inflammatory-based illness that can occur in those who have had COVID or been exposed. It’s fatal in some cases.

Mysterious cases of hepatitis in children with no known cause have recently been reported around the world. Some experts think COVID is the culprit, or at least a co-factor. There are also documented instances of COVID triggering autoimmune disease like Type One diabetes and celiac disease.

“There are different pathologies at play,” Brugler Yonts says. “I don’t think there’s one process that is ‘Long COVID’ in every single person. There are multiple processes going on.”

Dr. Petter Brodin—a COVID researcher, professor of pediatric immunology, and pediatrician at the Imperial College of London—has seen potential categories of Long COVID begin to fall apart when it comes to kids.

“The problem with this kind of thing in children is that it’s much more difficult, with any kind of vague symptoms, to get a straight answer,” he says.

Studies have shown that among those who perceive themselves as having Long COVID, fewer children than adults have objective symptoms.

“That doesn’t mean it’s all made up,” he says. “It might well be a real condition. Some kids, they feel something, they are not well, but we fail to capture it.”

Patients with a lot more to lose

Most patients at Brugler Yonts’ clinic complain of fatigue. It’s “far and away the most common symptom,” she says, reported in 80% of those it sees.

Other common symptoms include prominent headache, decreased exercise tolerance, decreased appetite, brain fog, and weight change, all of which occur in half or more of the clinic’s patients.

Then there are the odd symptoms, less common but perhaps more disturbing.

“We have had some patients describe the ‘brain on fire’ feeling, but it’s harder to quantify—it gets put under brain fog, which interferes with the ability to concentrate,” she says. “We have seen some kids have ringing in the ears or, more rarely, vertigo.”

Among the more difficult and heartbreaking cases is a young woman who had COVID and later began exhibiting violent behavior. She was hospitalized for psychiatric admission “and continues to have ongoing problems,” Brugler Yonts says.

Prior to COVID, she had no history of psychiatric issues.

“My heart breaks for her and her family and her mother, not knowing what to do,” she says.

Other especially tough cases she’s witnessed: potential Division 1 athletes who had been recruited and awarded scholarships only to have COVID sideline their college and athletic careers.

Some children in her clinic “have been out of school for basically two years because of their inability to participate, and that has not only been a struggle for the family, having to be at home, but the lack of social interaction, the lack of being able to do activities and seeing that impact on mental health on top of everything else,” she says.

Researchers are attempting to hone in on distinct Long COVID categories. But until they can nail down the biological causes, treatments will be limited to management of symptoms—and so much of that research focuses on adults, not kids.

“The adult world overshadows the pediatric world,” she says, adding that “thankfully, that’s because kids are generally healthier.”

But with longer to live, kids have the most to lose.

“The impact of these issues is greater if you’re looking at the impact on the overall years of life, years of quality of life,” she says. “Kids have a lot more of those to potentially be damaged. We’re giving them a voice.”