As an 11-year-old in a pre-COVID-19 world, Wednesday Lynch loved being part of a competitive cheer team. She’d gotten good at no-hands cartwheels and back tucks. Wednesday also adored hanging out with friends and riding her bicycle around her Dallas, North Carolina, neighborhood.
All that changed last September, when Wednesday was exposed to COVID-19 while attending virtual school with other socially distanced students at her gym. “A teen in the room didn’t know she had it at the time,” her mom Melissa recalls. Wednesday tested positive soon after.
She experienced many classic COVID-19 symptoms: exhaustion, low oxygen levels, and a loss of smell. Melissa Lynch cared for her daughter at home and after a few weeks the doctor said she could resume her regular activities.
Yet 10 months later she still hasn’t been able to. Every few weeks Wednesday has what her mother calls a wave of illness—three days to a week where she’s so tired she can barely sit up, her heart races, her head pounds, she sometimes spikes a fever, and, in the most recent wave, she had a seizure. Melissa has carted her daughter from doctor to doctor, some of whom were less than helpful; after one physician thought the virus might have damaged Wednesday’s heart, a cardiologist insisted there was nothing wrong. Wednesday is now being assessed by a special COVID Recovery Clinic at the University of North Carolina School of Medicine, Chapel Hill, although few treatments have yet been offered. “It’s frustrating that there’s nothing really available. As one doctor told me, We’re all in the woods,” Melissa says.
If doctors are stumped by post-COVID-19 syndrome in adults, it’s becoming increasingly clear that this is even more true when it comes to children. The condition, more commonly known as long COVID, refers to an array of symptoms that linger after a bout of the disease. Sufferers regularly complain of any number of ills, commonly fatigue, breathing difficulties, heart palpitations, headaches, muscle and joint pain, fever, dizziness, fatigue, brain fog, and more.
As with adults, this syndrome can strike kids after a mild or even asymptomatic initial case of COVID-19, as well as with more severe disease. It is distinct from multi-inflammatory syndrome, or MIS-C, the rare, serious COVID-linked systemic inflammation that has sickened some 4,000 children and caused 36 deaths in the U.S. While that too strikes later, most experts consider it a separate condition.
How many kids have long-COVID?
No one knows exactly how many kids there are like Wednesday. But several small studies hint that it may be a significant number.
When researchers in Rome followed 129 kids (the median age was 11) who had been positively diagnosed with COVID-19, more than a half had at least one lingering condition after their supposed recovery. In those at least four months out, 14 kids, or more than 10 percent of the total, were still felled by three or more bothersome symptoms.
Australian researchers tracked 171 younger COVID-positive children (median age 3) and found that 8 percent reported post-COVID manifestations up to two months later. In this study, though, by six months all of them had recovered.
In early June, Dutch researchers conducted a survey of pediatricians in their country who said 89 youths in their care were affected. Most troubling, says study coauthor Caroline Brackel, a pediatric pulmonologist at Amsterdam University Medical Centers, was that in more than a third of these children, symptoms were serious enough to cause “severe restrictions in daily life, mostly due to excessive tiredness, problems concentrating, and difficulties breathing.”
Recognizing this burgeoning problem, the United Kingdoms’ National Health Service just announced that it will spend the equivalent of $138 million dollars to create treatment centers around the country and to educate pediatricians about long COVID care.
So far, no studies have documented the rate in the U.S., something Alicia Johnston, a pediatric infectious disease clinician at Boston Children’s Hospital, attributes to everyone’s early focus on older adults, who were most likely to become hospitalized or die. “We dismissed it as COVID doesn’t affect kids seriously, but now we realize they can have these lingering symptoms,” she says.
With more than 4 million children and adolescents in the U.S. testing positive for COVID so far—14 percent of total cases—it’s clear this could be a major problem for kids, families, schools, and society. (Case numbers in children, as for adults, have dropped markedly in recent weeks, but 14,500 positive children’s tests were reported last week.)
Parents are banding together
In the absence of in-depth research or satisfactory answers, parents have banded together to share their own experiences.
Sammie McFarland, a mother in Dorset, England, was exasperated when she finally got a medical appointment for her 15-year-old daughter, only to have everyone at the office dismiss her complaints. Following her battle with COVID-19, Kitty had gone from an active, energetic teen to one who could barely sit up or eat. A nurse there told her it was anxiety, and “she’d get better when the lockdowns end,” McFarland recalls.
Although Sammie McFarland was suffering similar symptoms herself and could barely get off the couch, she felt she had to do something. So eight months ago she created a Facebook group, Long Covid Kids, for parents to find one another; it has grown to more than 3,000 members. Last month the group spun off its American members into Long Covid Kids USA, headed by Melissa Lynch.
Parents have felt shunned by many in the medical community and even criticized as fabricating their child’s illness or being overly pushy parents, McFarland says. “If we didn’t have each other, we would have nothing.” (Kitty has improved in recent months, but she is not back to normal.)
The group created an anonymous online survey to call attention to the problem. Hundreds of parents responded, with the majority describing kids debilitated with four or more symptoms months after their infection, according to results that were analyzed by scientists in Italy and the U.K. and posted to a preprint server in March. In half the cases, problems would periodically disappear before returning. Just 10 percent of the 510 kids had gone back to their previous level of activity.
“Parents are scared and frustrated,” Johnston says. “They want to do anything they can to get relief for their child.”
Part of the problem, for kids as well as adults, is that this syndrome is generally invisible to physicians. “Most of our tests are going to come back normal, says Marcos Mestre, chief medical officer at Nicklaus Children’s Hospital in Miami. For instance, fatigue, brain fog, dizziness and many other common symptoms don’t show up on blood tests or scans, one of the reasons some doctors think parents are overreacting.
In the youngest children, understanding what’s going on is especially challenging, says Carlos Oliveira, an infectious disease pediatrician who is part of the new children’s Post-COVID Comprehensive Care Program run by Yale Medicine and Yale New Haven Children’s Hospital. “Adolescents can verbalize having a headache or difficulty breathing, but younger children generally cannot,” he says. Even fatigue can be hard to spot, as it often makes a young child hyperactive rather than sleepy, as any parent trying to put their overtired child to bed understands.
Experts don’t yet know why post-infection symptoms occur in anyone. Theories include chronic inflammation triggered by inactivated viral proteins, or maybe a lingering low-level amount of active virus, or even the trauma to the body that the physical stresses of having COVID-19, especially a severe case, can leave in its wake.
To try to better grasp the causes, the National Institutes of Health announced in March that it will launch a new research effort known as CARING for Children with COVID, to better understand how COVID-19 specifically impacts young people. Although much of the research will aim to uncover causes and treatments for MIS-C, pediatric experts expect it to also reveal insights into long COVID.
Current treatment options
With everyone flying blind, doctors are looking to other post-viral infections for guidance, noting that kids often flail for months after getting over diseases like mononucleosis or Lyme.
Primarily, this means minimizing symptoms rather than getting to the root of the problem. “There is no cure. But the more rapidly we can reduce the burden of symptoms the better off the child will be in the long term. We don’t want fatigue, for instance, to cause them to miss a year of learning,” Oliveira says.
“I wish there was a quick pill that would turn things around, but it generally requires multiple providers with a lot of supportive care,” Johnston admits. If the child is suffering from body aches, for instance, doctors at Boston Children’s might prescribe medication but also add cognitive behavioral feedback or mindfulness meditation to quell any amplified pain, she says.
In a handful of children’s hospitals and major medical centers, specialized multidisciplinary clinics are starting to appear. Parents who take their child to one get coordinated treatments from the various practitioners who may need to be involved, including pediatric neurologists, gastroenterologists, cardiologists, physical therapists, and other experts.
Parents who cannot access these centers should still take a multispecialty approach, Mestre says. “Start with the pediatrician as the quarterback, but involve other specialists as needed,” he says.
It is important to remember that sometimes symptoms resolve themselves in time, Johnston says. “Oftentimes with other post-inflammatory conditions the symptoms linger for months but then the child recovers.”
Parents whose child has not contracted COVID-19 should do everything they can to keep it that way. “The best way to avoid post-COVID syndrome is to avoid getting COVID,” Oliveira says.
Younger children not yet eligible for the vaccine get some protection when their parents and others around them are vaccinated, Oliveira says. Adults should also follow other safety precautions, such as having children wear masks and social distance in high-risk environments.
Kids 12 and over, who are currently eligible for a shot in the U.S. should get one as soon as possible, Mestre says. “I’ve heard parents say that kids survive COVID, but it’s not just about survival. Doing an analysis of risks and benefits of the vaccine for your child needs to take everything into consideration, including the possibility they could wind up with long COVID,” he says.
Wednesday Lynch got her vaccine, which has offered her family some relief that she likely won’t get reinfected. Her mother has pulled all scheduled activities for this summer so she can spend the time resting and getting needed care from the COVID clinic. Her mom hopes that by the time the school year resumes in the fall, she’ll be back to her old, cartwheeling self.