Long COVID most often strikes seniors and adults, but children are also affected, even though they get less attention, new research shows.
Experts noted that the disease poses particular challenges for children and the doctors who treat them.
Parents and doctors need to be on the lookout for symptoms of long COVID in children and teens that might be easily missed or misdiagnosed, according to physicians and family groups.
Children are at lower risk for contracting COVID and often experience milder symptoms. But the virus is now widespread, and a recent study found that around 16% of pediatric patients with COVID go on to develop symptoms that last more than 3 months – the working definition of long COVID.
Parents and doctors are calling for more studies and more awareness.
Diane Sheehan, who lives outside Charlotte, N.C., says she was an active person and is now permanently disabled from long COVID. Her teenage son has it too and is still recovering.
He contracted COVID after a school event, she said. He had a mild case, but then he started experiencing dizziness and would even experience loss of consciousness when he stood up suddenly. After he contracted the virus a second time, he was bedridden for 8 months.
The staff at Hackensack Meridian Health, a pediatric long COVID clinic in New Jersey, has been working with area schools to help teachers and school nurses recognize possible long COVID in children and young people. The clinic is one of about a dozen in the United States that specializes in pediatric cases.
Katherine Clouser, MD, a pediatric hospital medicine specialist, has been with the clinic since it opened in 2021, and she’s seen a steady flow of patients. Some get better, but she sees a few new cases each week.
“We are seeing children who are having a difficult time returning to school and sports,” she said.
The clinic is having success with a mix of approaches, including intensive rehabilitation, talk therapy, and some off-label use of nirmatrelvir (Paxlovid), an antiviral now being studied as a treatment for long COVID through a National Institutes of Health clinical trials initiative that was announced last month.
Treatment depends on symptoms and is determined on a case-by-case basis, Dr. Clouser said.
Families of her patients are grateful, she added.
“We hear a lot of parents who were desperate for someone to believe them – or someone who knows about it,” she said.
A recent review of more than 30 studies with about 15,000 participants concluded that 16.2% (95% confidence interval, 8.5%-28.6%) of the pediatric participants experienced one or more persistent symptoms of long COVID at least 3 months after acute infection.
Estimates of the number of children and youth with long COVID have varied widely. A 2022 study put the number at more than 25% of cases, but the American Academy of Pediatrics notes that estimates of the percentage of children infected with SARS-CoV-2 who go on to have long COVID range from 2% to 66%.
The federal Recover Initiative has enrolled more than 10,000 children and youth – a number it plans to double – and studies of electronic health records are underway. The Recover pediatric team is also setting up a cohort that they plan to follow into 2025.
Some clinics are having luck treating young people with approaches ranging from special diets to off-label medication.
David W. Miller, MD, who runs the long COVID clinic at the UH Rainbow Babies and Children’s Hospital, Cleveland, said he’s seen about 250 patients.
A warning sign of long COVID in children is profound fatigue, he said.
“It’s the most common symptom,” Dr. Miller said. “They feel like they have the flu all the time.”
Many also experience orthostatic hypotension on standing, triggering dizziness.
He said his team targets symptom groups. Initial management consists of a diet without sugar or refined carbohydrates. Skipping pasta and sweets can be hard for young people, but Dr. Miller said sometimes the diet alone helps.
Many have vitamin D and iron deficiencies. Others need help getting a good night’s sleep. He’s treated 50 with off-label low-dose naltrexone.
Some people with long COVID – both young and old – complain about being misdiagnosed as having depression. Dr. Miller says he see a lot of anxiety – some situational and some biochemical – in pediatric patients. But he cautions doctors not to treat their illness solely as a mental health problem.
His advice: If a young person or child experiences a major change in his or her regular level of functioning or has multiple COVID symptoms that don’t go away after several months, parents and doctors should consider long COVID as a possible cause.
Dr. Miller said most of his patients get better over time with some treatments: “We see improvement in the majority of kids who can stick to the regimen,” such as a sugar-free diet, supplements, and adequate sleep. Recovery has been slow and incomplete for Diane Sheehan and her son. She was training as a permanent make-up artist, she said, but now has hand tremors that make work impossible.
She has found doctors who treat some of her symptoms with antihistamines, and her son has benefited from physical therapy.
But for now, her son is passing on a scholarship he was awarded to attend North Carolina State University this year. Instead, he’s living at home and going to a local college.
Ms. Sheehan urges parents to be on the alert for signs that their children might have long COVID, which can be confused with many other conditions.
A version of this article first appeared on Medscape.com.