Hidden toll: Rising concerns over long COVID in children

Evidence is growing that while children have a lower rate of severe acute illness from COVID-19, lingering effects after even seemingly mild cases are impacting millions of children and teens. Between 1 in 5 and 1 in 10 pediatric infections — including both asymptomatic cases and those that are severe — are followed by long COVID symptoms, per a recent JAMA study.
That’s as many as 6 million U.S. children. And research suggests the risk rises with repeat infections. Meanwhile, symptoms can last three years or more.
Longer-term effects, which can show up just weeks or months after one had COVID-19, “impact every organ system,” according to a study of adolescents recently published in JAMA.
In research published this month, children who had COVID-19 were found to have significantly higher risk of developing type 2 diabetes within six months of having COVID, compared to peers who had other respiratory illnesses — a finding published in JAMA Network Open.
Symptoms must last at least three months to be considered long COVID. They can be physical, cognitive and mental, Dr. Kirti Sivakoti, an assistant professor of pediatrics at University of Utah Health and associate director of the Pediatric Autonomic Unexplained Symptoms Evidence-Based Program at Intermountain Primary Children’s Hospital, told the Deseret News. She said that the “multitude of symptoms” can include dizziness, headaches, brain fog, extreme fatigue and various types of pain.
There are many similarities between long COVID and postural orthostatic tachycardia syndrome, she added. That condition, often called simply POTS, is a problem in the autonomic nervous system that leads to an abnormally fast increase in heart rate when sitting up or standing. It can result in lightheadedness, fainting, palpitations, fatigue, headaches, nausea, sleep disturbance and other problems.
In children, long COVID can often be seen in school absenteeism and failure to perform academically at the youth’s previously high level, she said.
What makes some young people susceptible and others not remains a mystery, but Sivakoti said evidence suggests that external, behavioral, environmental and genetic factors contribute.
An essay in Scientific American by Blake Murdoch recently explained part of the misunderstanding and underestimation of COVID-19′s impact on kids, noting it had “some help from scientists. In 2023, the American Medical Association’s pediatrics journal published a study — which has since been retracted — reporting the rate of long COVID symptoms in kids was ‘strikingly low’ at only 0.4 percent. The results were widely publicized as feel-good news, and helped rationalize the status quo, where kids are repeatedly exposed to SARS-COV-2 in underventilated schools and parents believe they will suffer no serious harm.”
Murdoch is a health policy expert, bioethicist, lawyer and science communicator at the University of Alberta’s Health Law Institute who looks particularly at “disconnects between scientific evidence, ethical principles and policy.”
The belief that COVID has little effect on children means people may not take adequate precautions to reduce the risk of exposure. And a lot of times it takes longer to reach a diagnosis, even after other causes for symptoms have been ruled out. That can lead to significant loss of function. Early diagnosis and treatment are key to preventing long-term decline and improving quality of life, Sivakoti said.
A growing body of research links COVID-19 infection in kids to lingering health issues.
A study in JAMA by researchers at Rutgers University and the National Institutes of Health found long COVID symptoms in children are “tangible, pervasive, wide-ranging and clinically distinct within specific age groups,” as a Rutgers release noted.
“We have convincing evidence that COVID-19 is not just a mild, benign illness for children,” said Lawrence C. Kleinman, a professor of pediatrics and population health expert at Rutgers’ Robert Wood Johnson Medical School and the study’s third co-author. “There are children who are clearly disabled by long COVID for long periods of time.”
That study included 140 researchers throughout the U.S. and nearly 5,400 children and adolescents. Of those, about 86% had been infected with COVID-19. The study focused on 74 known symptoms across nine domains: eyes, ears, nose and throat, heart and lungs, gastrointestinal, dermatologic, musculoskeletal, neurologic, behavioral and psychological, and general, per Rutgers.
Forty-five percent of infected children ages 6-11 reported having one or more prolonged symptoms after they got over the active infection. So did 39% of adolescents 12 to 17 who had been infected with COVID — both numbers significantly higher than in children who had not been infected. The study said that for adolescents, the most common symptoms were loss of taste and smell, then low-energy, muscle aches and fatigue. In the younger group, memory and focus were the main issues, followed by stomach pain, headaches and back or neck pain.
Questions have been asked about how researchers know the symptoms are a lingering effect of COVID, not other conditions. A recent study in the journal eClinicalMedicine went to great lengths to rule out other causes through detailed medical evaluations and by “carefully excluding other potential causes of symptoms such as glycemia, anemia and other infections,” to be sure the symptoms could be attributed to COVID, as Medical and Life Science News reported.
Among other issues, the study found COVID infection increased the risk of developing autoimmune disorders, including Hashimoto thyroiditis and celiac disease.
In the study that linked COVID-19 to a greater risk of developing diabetes, records from 600,000 children ages 10 to 19 were used — half with a history of COVID infection in 2020, 2021 or 2022, and half with other respiratory infections, including flu. Lead author and Case Western Reserve University School of Medicine epidemiologist Pauline Terebuh told the Post it was a “huge spike. If a child is getting diagnosed with diabetes, they have a long life to carry that chronic disease.”
What’s driving the link requires further investigation, the researchers said. The Post noted that there’s “debate among scientists about the extent to which Type 2 diabetes might be an autoimmune condition.”
The study does not suggest all children who are infected with COVID will develop diabetes. And Sivakoti said doctors haven’t seen diabetes related to COVID at the Intermountain Primary clinic, “but we have seen a lot of long COVID.” She notes great overlap in symptoms treated in the different clinic arms, which include POTS, dysautonomia and chronic pain.
“Honestly, there’s just so much overlap between all these three that we almost consolidated into one. With long COVID specifically, it’s sort of this range, this multitude of symptoms, whether it’s physical, cognitive, mental, which has lasted for a long time after COVID. Chronicity is an important factor here,” Sivakoti said.
The fatigue the young people experience isn’t the kind where you work a 16-hour day, go home exhausted and sleep 10 hours, then feel fine. “It’s the type of fatigue that rest doesn’t take care of and these patients are extremely tired to even go to school. So there is this huge rate of school absenteeism, school missing, missed academic potential, the huge sort of cost for families,” she said.
Some patients have abdominal pain, joint pain and respiratory symptoms. “I would say it can affect anything and everything,” she said, adding that it can be a long journey to diagnosis and then back to function and quality of life. Getting a diagnosis and then beginning to treat the symptoms is important, because it doesn’t take long for function to decline considerably, Sivakoti said.
Studies find vaccination decreases the risk of not only getting COVID, but also of having long-term symptoms, she said.
Happily, long COVID symptoms do diminish over time, Sivakoti said. But often the children have already lost ground in education and development. She’s a fan of prevention so that long COVID doesn’t ever impact them at all.