Children have long-haul symptoms, too
Before the coronavirus pandemic, Madilyn “Maddie” Dayton played volleyball and basketball and ran track. She attended in-person school — and still had plenty of energy left over to race around her small town of Cokeville, Wyo., with friends.
Today, more than six months after being infected with the virus, she’s struggling with lingering effects of her illness.
While doctors recently cleared her for limited physical activity, Maddie, 13, estimates that she can do only about half of what she used to do. Even Zoom school can be too much some days.
“She’ll zonk out in front of her computer,” her mother, Marilyn Dayton, said, “and I’ll have to wake her.”
Numbers of children having persistent symptoms after COVID-19 are rare but growing, doctors say, unnerving parents and physicians who are tracking the often strange and fluctuating constellation of symptoms. On Facebook support groups and other social media, families describe their struggles to be taken seriously and express frustration that basic scientific knowledge is lacking about what is going on.
Many of the children who suffer from enduring effects report that they continue to feel lousy — even though they have cleared the virus, though they are not suffering from obvious organ damage, and though their scans, bloodwork and other tests come back clean.
Public health officials and scientists often talk about how children have been largely spared from the devastation of COVID-19, the illness that can be caused by the novel coronavirus. But their story is incomplete without understanding “long-haulers.”
Nearly 3.17 million U.S. children have tested positive for the virus. Few have been hospitalized, and fewer have died, but some children — whether they had mild or severe cases, or no symptoms at all — are developing problems that last for weeks or months after their initial infection. According to surveys and studies of small groups of children, the symptoms include fatigue, headache and heart palpitations.
‘A lot of questions’
In the early months of the pandemic, when many children sheltered at home, the phenomenon of longhaul symptoms appeared to be limited to adults. But as schools, sports and other activities started up, it has become clear children are vulnerable, too.
The World Health Organization has recognized that COVID-19 “can sometimes result in prolonged illness, even in young adults and children without underlying chronic medical conditions,” but efforts to characterize the illness have relied mostly on phone surveys, case studies and anecdotal evidence.
A growing number of medical centers — Boston Children’s Hospital, Kennedy Krieger Institute in Baltimore, National Jewish Health in Denver and Norton Children’s Hospital in Louisville, Ky. — are setting up multidisciplinary clinics to try to better understand and treat these patients. And a research project funded by the National Institutes of Health will explore the range of effects COVID-19 has had on children.
“One of the most difficult things about caring for these patients is they have a lot of questions about short- and long-term effects, about what to expect,” said Dongngan Truong, a pediatric cardiologist at Intermountain Healthcare’s Primary Children’s Hospital in Salt Lake City, where Madilyn is being treated. “And right now, we don’t know what to expect.”
Children infected with SARS-CoV-2 — the scientific name for the novel coronavirus — are believed to suffer from two distinct illnesses. The first is acute infection with the virus that may lead to respiratory distress, blood coagulation issues and multisystem organ involvement similar to what adults experience. There’s also a mysterious and rare, but serious, inflammatory illness known as MIS-C that is limited to pediatric patients and several young adults and appears to occur weeks or months after infection.
Early anecdotal reports from pediatric researchers suggest that both illnesses appear to have similar longer-term manifestations, at least superficially.
Studying outcomes
In a major initiative announced this month, the National Institutes of Health is coordinating with pediatric researchers to look at the doses and timing of treatments, and why some children appear at greater risk for severe illness. A major component of the initiative involves looking at long-term outcomes.
One working theory is that long-haul COVID-19 may be similar or related to chronic fatigue syndrome, a condition characterized by extreme and persistent tiredness that cannot be explained by another medical condition. Researchers who study the illness speculate that people with the ailment may have once been infected by a virus they never cleared, a theory some experts believe may also apply to COVID-19. But for now, no one really knows.
A few recent studies have shown that some young adults may have a genetic susceptibility to a hyperinflammatory response, and researchers have been curious to look for those children, too.
Adrienne Randolph, a professor of pediatrics at Harvard University’s medical school, said she worries that some lingering issues may originate from neurological complications that are more difficult to diagnose. She said it is important to understand the cause of complications and their effects on cognition and development as the number of infected children rises.
While children seem to be protected from some aspects of the virus, “it’s still better that they don’t get exposed to the virus at all,” Randolph said.
“It can cause rare but severe complications,” she said. “The message is kids aren’t completely safe from this virus.”
In a study published last week in JAMA Neurology, researchers detailed neurological issues in children with COVID-19 or MIS-C. Most were transient, but some were life-threatening or fatal.
Truong from Primary Children’s in Salt Lake City, and Jane Newburger, a pediatric cardiologist at Boston Children’s, are teaming up to lead a 32-center study that will follow MIS-C patients for five years. Newburger said that while many children return to earlier activity levels, others — mostly preteens and teens — suffer from challenges.
Some experience difficulty with thinking, remembering, processing new information or paying attention. Others report what is known as orthostatic intolerance, meaning they might develop worsening symptoms when they change positions, such as sitting up or standing down.
“Some kids even wake up feeling tired,” Newburger said.
Started with headache
Maddie’s battle with SARS-CoV-2 began in October with a headache. A few days later, she could not eat and developed a rash all over. Then one morning, she was unable to move at all. She was taken to Primary Children’s, where she spent six days — four in intensive care — and was diagnosed with MIS-C.
Neither of her parents, nor her four siblings, had been sick during the pandemic, and there had been few cases in their area. So her mother was perplexed when doctors told them that she had antibodies to the virus.
When Maddie was discharged, doctors worried mostly about her heart and warned about permanent damage. But at a follow-up appointment in February, her heart appeared to have regained its squeezing function. Her recovery is consistent with data published this month showing that children who had the inflammatory syndrome and subsequent severe cardiac problems returned to normal within a month.
But Maddie’s lingering symptoms sparked other concerns.
“They saw chronic fatigue,” Marilyn, her mother, said. “All the bloodwork, everything came back normal. But she sleeps a lot. She can’t make her body do what it used to do.”
Maddie recalls returning to her basketball team — she usually plays guard — only to be on the sidelines: “I was frustrated and thought, ‘Why am I sitting here and not playing?’ ”
Every week, she and her parents talk about whether she’s well enough to return to school in person. Every week, they delay another week to give her more time to regain strength. Until then, she is enrolled in an online program.
Maddie said she’s improving a little every day and has made it her goal to run up a hill near her house every day.
“My advice to other kids is to not give up. It’ll be hard,” she said. “But don’t give up.”