Jack Ford, a 9-year-old boy in Michigan, awoke on November 10, 2021 with worse sniffles than the day before. He was scheduled to get his COVID-19 vaccine at school that day, but his mother, Kim, instead decided that he should get a COVID test. It turned out positive.

Since then, Jack has lived with persistent symptoms that have limited his time attending school and playing ball. Even too much video gaming can make him sick the next day. His stomach hurts, his nose is stuffed, his breathing is labored. “It’s just an absurd amount of things that you can feel,” he said in an interview with CNN.*

He’s Not Alone

While about 30% of adults with COVID-19 develop Long COVID, the number for children is estimated at 2%-10%. It could be higher, though, since it may go unrecognized by parents and pediatricians. Nearly 13 million children in the U.S. have had COVID-19 already, and it can take months to see a doctor who treats children at a Long COVID clinic.

Sara Kristen Sexson Tejtel, M.D., Ph.D., M.P.H. of Texas Children’s Hospital in Houston believes pediatric Long COVID is a “very much undiagnosed issue.”

Common Child Long COVID Patterns

High-risk children can be difficult to identify, since pediatric Long COVID often develops after a mild COVID infection. Even when tested for a probable cause, as in Jack’s case, it’s common for results to come back normal.

Amy Edwards, M.D. of Cleveland’s UH Rainbow Babies and Children’s Hospital reminds families that “there are limits to what medical science understands and can test for. Sometimes, we’re just not smart enough to know where to look for it.” She said adults often experience organ-related complications that show up on tests, so it’s more obvious than in children.

While many questions remain, Sexson Tejtel’s clinic has found several symptom patterns:

• Fatigue, brain fog, and severe headaches, which affect schooling
• Heart-related issues, like rapid heartbeat, chest pain, and dizziness, particularly when resuming normal activities
• Stomach issues, often with a change in taste and smell

Though not that completely different from adults, Sexson Tejtel said these symptom patterns are not the “mixed bag” of organ involvement seen in adults.

Limited Energy a Big Factor

Post-exertional malaise is common in Long COVID, and Jack’s case is no exception, his mother explained. Just the mental energy used while watching TV or sitting playing video games “will knock him out,” she said. He still can’t complete a full school day.

Edwards says parents have to carefully plan their children’s activities, since everything takes energy. “Long-haulers have to think about every single aspect of their day, and when they can expend that energy. They have to have that balance. Otherwise, they run out.”

Kids’ Long COVID Often Dismissed

Not unlike adults, anxiety is common in pediatric Long COVID patients, and may be partly due to the disbelief they often experience from adults, including doctors. They’re accused of exaggerating, or being attention seekers, or told that it’s all psychosomatic. “People may think you’re faking it,” said Jack, “but you’re not.”

Alexandra Yonts, M.D. of Children’s National Hospital in Washington D.C. acknowledges there are many doctors “who just dismiss it outright,” and believes there needs to be better recognition of the condition’s real impact. She has young patients who now need wheelchairs, crutches, and other COVID-related assistance. “These kids should be believed.”

Access to Care Can Be Difficult

Like many Long COVID clinics, Edwards’ clinic addresses everything from lung, energy, and sleep issues, to physical rehabilitation needs, healthy eating guidance, and mental health. The comprehensive approach works, but not all children have parents who can geographically or financially access the treatments, or even afford healthy food. It keeps Edwards up at night.

“It terrifies me for those families in particular, because they’re already starting behind. And now they have kids with COVID long-haul. You just have to hope more people will become aware of the problem and try to help.”

*Christensen, J. (2022, May 6). Children get long Covid, too, and it can show up in unexpected ways. CNN Health. https://www.cnn.com/2022/05/06/health/children-long-covid-wellness/index.html