As more kids go down the ‘deep, dark tunnel’ of long COVID, doctors still can’t predict who is at risk
At 14 years old, Kate Dardis knows what pain feels like and how to work through it. An accomplished gymnast accustomed to training four hours a day, she has met a competitor this year that she can’t beat with exercise or sheer willpower — yet.
Rarely sick before a stomachache kept her home from school for three days in October, the Bloomington, Ill., eighth-grader was hit by a headache in January that still hasn’t loosened its grip. Her heart races. Her body aches. She gets winded climbing stairs and feels dizzy when she changes position. Concentrating on schoolwork is difficult remotely and exhausting in person.
Kate learned last month from a team of doctors at Boston Children’s Hospital that she is suffering from the post-COVID syndrome better known as long COVID. Her COVID-19 test was negative last fall after some teammates and coaches at her gym tested positive, but in February an antibody test ordered by her pediatrician confirmed she had been infected with COVID-19.
“It’s really difficult,” she said. “As a gymnast, I’ve always pushed through different types of pain and injury. I try to push myself, but with this whole experience, it’s just been too hard.”
“She was a completely healthy, active kid and this just totally changed her life,” her mother, Sara Dardis, said. “So obviously, COVID is real and it’s real for kids. It needs to be taken seriously.”
Kate’s story makes clear that long COVID is not an adults-only phenomenon. Numbers are hard to come by, but more children and adolescents are experiencing chronic symptoms after COVID even as the pandemic ebbs in the U.S., say doctors at the few clinics devoted to caring for them. Although the disease has played out in ways that differ between adults and children, long COVID is posing the same mystery in kids as in adults.
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“I don’t think we have a good understanding at all about the pathophysiology behind post-COVID syndrome,” said Alicia Johnston, one of Kate’s doctors and head of the Boston Children’s Hospital long COVID clinic. “And I’m not sure that the pathophysiology is going to be the same in post-COVID syndrome in adults compared to post-COVID syndrome in children.”
No one really knows how common the collection of lingering post-infection symptoms might be in adults; even less is known about its prevalence or course in children and adolescents.
In adults, studies peg the proportion who experience prolonged difficulties at 1 in 3 COVID patients, but there is a vanishingly small set of numbers about children. Experts told STAT they’ve all looked at one research paper from Rome that studied 129 patients from 2 to 18 years old, as well as data on about 9,000 children and adolescents from the U.K.’s health system. From that small base, they surmise a plausible range from 7% to 20%. In the U.S., nearly 4 million children and adolescents under 18 have tested positive for Covid.
A half-dozen clinics across the U.S. — roughly one-tenth of those seeing adults — strive to care for young patients with post-COVID mental and physical health issues affecting multiple organ systems: neurological, respiratory, gastrointestinal, musculoskeletal, cardiovascular, and dermatologic. Treatments borrowed from other post-viral syndromes and tailored to symptoms are the only tools doctors have; so far, they seem to help in many cases.
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At the pandemic’s outset, it looked like children might be spared the severe illness striking adults in the first COVID wave, when hospitals were pushed to their limits and older age tracked tightly with worse outcomes. Children seemed at first to show minimal symptoms. Then in a small minority of cases, the rare but mysterious multi-inflammatory syndrome, or MIS-C, began appearing in children (and some adults, too, labeled MIS-A). The Centers for Disease Control and Prevention reports 4,018 cases of MIS-C, including 36 deaths, in which life-threatening inflammation can strike the heart, lungs, kidneys, brain, skin, eyes, or gastrointestinal organs.
Long COVID in children is separate and distinct from MIS-C, for which children are being successfully treated. But like long COVID in adults, there is no way now to predict who might be vulnerable to later difficulties. Among children and adolescents, there are varying degrees of impairment in long COVID. To pick just the neurological, the spectrum of troubles spans headache to brain fog to numbness that leaves children unable to walk.
“We all have a daunting task in front of us to try to understand what these risks are and what the protective factors are in learning about these illnesses, with a lot of multidisciplinary expertise, and a big involvement with the clinician community,” said Bill Kapogiannis, a program director in the maternal and pediatric infectious diseases branch of the National Institute of Child Health and Human Development.
He said there are biological and immunological differences between kids and adults that complicate the task. One challenge comes in imaging and other tests. In adults, they show something. Not so in kids.
“The adults have myocardial fibrosis and they’ve got changes on their CT scans and they’ve got thromboembolism and organic pathology that’s easy to see,” Johnston of Boston Children’s said. “And they have abnormal labs. The kids that we are seeing have normal white blood cell counts in general, normal inflammatory markers, normal pulmonary function tests, normal EKGs, normal X-rays, normal echocardiogram. And yet they’re clearly impaired.”
Age seems to make a difference. More patients with long COVID are over 12 and some are college-age, so at least they are able to tell doctors what distressing symptoms they feel. Younger children with lingering symptoms after COVID infections will be watched closely.
“You can get COVID at 18 months of age,” Audrey John, chief of pediatric infectious diseases at the Children’s Hospital of Philadelphia, pointed out. “Maybe you can’t tell us that you have a little brain fog. Maybe you can’t tell us that you just don’t feel great. But whether those kids grow like they’re supposed to, develop language like they’re supposed to, go on to be successful in school like they’re supposed to — we’re not going to learn for a long time.”
Doctors see similarities between long COVID and what can happen after mononucleosis or in other post-viral syndromes. Among teens, high-achieving athletes and successful students sometimes don’t get back right away to where they were before mono. They can’t get off the sofa, they can’t go to the mailbox — like their post-COVID peers. That similarity argues for developing an integrated medical approach to take care of all these patients better, including treatment for the anxiety and depression that have been exacerbated by the pandemic. “There’s a lot of overlapping Venn diagrams of what’s going on with those kids right now and all of the [therapeutic] pieces that are needed there,” John said.
Carlos Oliveira, director of congenital infectious diseases at Yale New Haven Children’s Hospital, is also reminded of children whose immune systems are thrown out of balance after mononucleosis, suffering prolonged fatigue for months. “That is classic. We see it all the time, especially in adolescents,” he said. “We still don’t necessarily know why this happens to some kids and why not all.”
The same issues arise with chronic Lyme disease, for reasons that aren’t understood. “Some people, for whatever reason, have this prolonged inflammatory reaction even after the virus and bacteria are long gone,” he said. “And we’re still sort of puzzling through that.”
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Patients with medically unexplained syndromes learn techniques to blunt and reduce the pain their brains are sensing. At the new Pediatric Specialty Center for Long COVID at Yale New Haven Children’s, some of those lessons will be brought to bear.
“The pain is real, but we can teach them techniques to relax … so they can at minimum have a more normal quality of life and not be so debilitated,” Oliveira said. “What I tend to tell parents is that we’re learning along with them.”
At RWJBarnabas Health in New Jersey, Uzma Hasan, chief of pediatric infectious diseases, sees fatigue and brain fog, not being able to think, and difficulty finding words in children who may also have shortness of breath with minimal exertion. Then there are never-ending coughs, muscle aches, joint pain, headaches. They feel weird tingling sensations or certain smells are so foul they don’t want to eat.
“It’s mostly the teens that I’m seeing who have lingering symptoms,” Hasan said. “We have to make sure that these kids are functional and back to themselves, after a couple of months out of school, so that they don’t have any long-term consequences.”
One of Hasan’s patients just wants to be her old self.
Now 18, Ranya Ribera of Newark, N.J., caught COVID-19 in March 2020. She endured a hospital stay and a difficult quarantine at home. But more than a year later, her recovery is still a question mark. Her grades are good in virtual school, but her state of mind isn’t. Her plans to better manage her weight have fizzled. She misses her friends, but anxiety keeps her from seeing them in person. She can’t sleep.
“I thought I was going to die,” she said last month. “Ever since I had COVID, I have minimal motivation to do anything. I just want to be by myself.”
For Ribera, some relief came when she shared her experiences in the hospital’s patient-family advisory council, a long COVID support group that grew out of the RWJBarnabas Post-COVID Recovery Program. As a COVID side effect, her waist-length hair fell out, leaving her with “just an Afro.” So did another patient’s, Ribera learned in the group.
“It made me think that I’m not alone: Some people experienced the same symptoms as me,” she said. “It sounds bad to say this, but I’m glad that I have someone to relate to when they lost their hair.”
More research is needed to understand which children are at risk for long COVID, and whether those who are at risk will find appropriate treatment. When talking about risk for COVID infection, severe illness, and problems after the infection clears, health disparities are also part of the equation. John of Children’s Hospital of Philadelphia says there’s a mismatch between the racial and ethnic representation of the children known to be at higher risk for acute COVID hospitalization and the children coming in for care of their long COVID.
“I think that may just be because of access. Certainly outcomes have seemed to be different with social determinants of health,” she said. “When we think about how we study this condition, we can’t wait for patients to come to us, we really need to come to them. We need to get access to the patients who don’t have easy access to care.”
At RWJBarnabas, children treated in intensive care for acute COVID were almost all Black or Hispanic, Hasan said. The long COVID clinic for children there has seen about 70 patients, including those from other racial and ethnic groups.
Oliveira at Yale New Haven points to social determinants of health, which are at play not just in infection but also in comorbidities that make both children and adults more vulnerable.
“A lot of these race and ethnicity disparities tend to not just be one thing,” Oliveira said. “It could be that they just got exposed to a much higher dose of the virus to begin with whenever they were initially infected. I think it’s a combination of both societal issues, probably some racism, and then the dynamics of the virus.”
Longer, larger studies will help explain if age, gender, family history, or other factors matter. Johnston of Boston Children’s, whose COVID clinic has seen about 40 patients, yearns for predictors of long COVID. “Is there some way that we could identify these kids early before they go down that deep, dark tunnel?”
Vaccination is not a treatment — even though some people feel their symptoms ease after getting a COVID shot — but it offers a ray of optimism for those 12 and older. “When you think of how much pain syndromes and other psychosocial problems are compounded by a feeling of isolation or worrying about family members, I think vaccination brings hope,” John said. “I can well imagine it helps psychologically, even if we’re not sure how the physiology works.”
Ribera is ready for her shot.
“I am going to get the vaccine,” she said. “I would be scared that the next time I get COVID, I won’t be able to recover and I would pass away.”
Kate Dardis hoped she might feel better after being vaccinated, but her first dose didn’t leave her feeling any different. That’s not to say she isn’t glad to get her second dose, and she’ll continue to try medicines for her headache, use asthma inhalers to help her breathing, and build up her strength step by step.
“My doctors are telling me I just have to listen to my body and take it one day at a time.”
Johnston has hope for another reason.
“In general, kids are resilient and they tend to get better,” she said. “And so I would say we’re cautiously optimistic when it comes to this syndrome in adolescents as well.”
This article is reproduced with permission from STAT. It was first published on June 10, 2021. Find the original story here.