About 5.8 million children had symptoms of long COVID, study shows

An estimated 5.8 million children nationwide have dealt with the effects of long COVID, from common symptoms such as fatigue and cough to neurological and autoimmune conditions, according to a new report from Columbia University's Irving Medical Center.

While the majority of young people who get COVID-19 recover quickly, some experience symptoms that can persist for months and even years, although the data on these cases, experts say, is still emerging. 

“We're behind in people understanding and really recognizing that [long COVID] does actually happen in children,” said Dr. Melissa Stockwell, a pediatrician and chief of the Division of Child and Adolescent Health at Columbia, who co-authored the report. “As pediatricians, we're really concerned about that because, for some kids, it could be mild. But for others, there's highly debilitating symptoms that are really affecting their quality of life. It's hard to attend school or focus when they're in school. It's impacting their ability to play with their friends and do all the activities that we know are really important for their development.”

The Centers for Disease Control and Prevention defines long COVID as ongoing health problems four or more weeks after initial infection.

The estimate of 5.8 million with long COVID is based on the fact that nearly 20% of adults who reported contracting the virus had symptoms three months later, and about 18% of all COVID cases were children, according to federal surveys analyzed by the CDC. 

There are no definitive blood tests or bio markers that allow doctors to test for long COVID, nor is there data on how many New Yorkers have dealt with the condition, although Stockwell suspects the number is sizable.

“The scientific community has acknowledged an urgent need to understand more about [long COVID] in children,” according to the report, which will be published Wednesday in Pediatrics, a journal of the American Academy of Pediatrics. Although [long COVID] can affect any individual, populations deserving specific focus include children with intellectual and developmental disabilities, children with medical complexity, and those with prolonged debilitating symptoms.”

The majority of published research on long COVID has focused on adults, with limited information on the pediatric population. Ongoing research, Stockwell said, will examine why some children develop the long-term ailment and others do not.

There are only about a dozen pediatric post-COVID-19 programs nationwide, including one in Brooklyn. Stony Brook Medicine's Post-COVID Clinic in Lake Grove has seen roughly 1,500 adult patients, officials said, but does not see children.

The Columbia study indicates that fatigue and malaise are the most common manifestations of pediatric long COVID, along with shortness of breath, respiratory and gastrointestinal issues, difficulty concentrating and mental health concerns.

But the study also finds that children living with long COVID can face less common conditions, including: type 1 diabetes; brain fog; chronic fatigue syndrome; autoimmune diseases such as lupus and multisystem inflammatory syndrome in children, which results from a hyperinflammatory response to the virus observed two to six weeks after infection.

Dr. Sharon Nachman, chief of pediatric infectious diseases at Stony Brook Children’s Hospital, said it's likely the virus “jump-starts” the potential for severe illness in many long COVID patients. 

“I don't think of it as one illness,” she said. “I think you have a potential to have a problem in your future, perhaps an autoimmune or arthritis problem or a neurological problem. And this virus jump-started that potentiation for illness into a real illness.”

Concetta Van Winckel, of Fort Salonga, said her 9-year-old daughter, Evelyn, has finally recovered after suffering with the symptoms of long COVID for about seven months.

When Evelyn tested positive for COVID in October 2021, she had pain in several parts of her body, along with fatigue, her mother said. The fatigue failed to immediately subside and the pain, which went away for about a week, returned worse than before, preventing the fourth-grader from being touched at all, she said.

After months of physical and occupational therapy, acupuncture and massage treatment, Van Winckel said, Evelyn is “now 100%, although I think sometimes emotionally she's a little bit different.”

And while Evelyn, who is taking part in an ongoing Columbia study on pediatric long COVID patients, is now healthy enough to play soccer goalie, the fear of a re-emergence is ever-present.

“We don't know what will happen if she gets COVID again,” Van Winckel said. “We still live in fear of that.”