Teens and kids with long COVID are showing surprising new symptoms

Rose Lehane Tureen is one busy teenager.

The 16-year-old is class president, an Irish step dance champion, singer, cross-country runner and straight-A student at her high school in Maine.

Her accomplishments belie the reality that she suffers from a debilitating headache that has lasted for more than four years, one of the several long COVID symptoms she's endured since an infection in March 2020.

At the beginning of her illness , Rose went to the emergency room half a dozen times and was hospitalized twice with dizziness and blinding head pain. She also had red and swollen fingers, toes and ears; peeling skin; joint pain; problems controlling her temperature and terrible dreams.

She lost years of her life to long COVID and is trying to make up for it.

“I had to decide if I wanted to wither away on the couch in the dark or push through and do things that made me happy,” she said. "I'm reclaiming what it's taken and trying to live my life."

Rose is one of the estimated 5.8 million children in the U.S. with long COVID, many of whom have not been diagnosed because doctors, parents and patients fail to recognize the constellation of symptoms, experts say. A new study funded by the National Institutes of Health aims to arm families with information, identifying the most common long COVID symptoms in school-aged children and teenagers.

“Children aren’t just little adults,” said Dr. Melissa Stockwell, the study's coauthor and division chief of child and adolescent health at Columbia University. The more providers understand how long COVID impacts people at different ages, the easier it will be to diagnose children and provide prompt care.

Long COVID kids: Most get better. Doctors worry about those who don’t.

Long COVID symptoms in kids, teens

The study included 5,300 younger school-aged children and teens from more than 60 healthcare facilities across the U.S. between March 2022 and December 2023.

Researchers found teenagers between 12 and 17 were more likely to report fatigue, pain and changes in taste and smell, whereas, younger schoolchildren between 6 and 11 were more likely to have difficulty focusing, sleep problems and stomach issues, according to the report published Wednesday in JAMA.

Long COVID symptoms affected almost every organ system, and most patients reported symptoms that affected more than one part of their body.

In the report, younger school children and teens commonly reported back or neck pain, headaches, lightheadedness or dizziness and trouble with memory or focus. The study authors were also surprised to find that shared symptoms among the younger children included phobias, specifically the fear of crowded or enclosed spaces, and refusal to go to school.

The symptoms that showed up in younger children were less likely to overlap with symptoms experienced by adults with long COVID. The authors said this underscored the importance of age-based research.

“The symptoms that make up the research index are not the only symptoms a child may have and they’re not the most severe, but they are most predictive in determining who may have long COVID,” said Dr. Rachel Gross, the study's lead author and associate professor of pediatrics and population health at New York University Grossman School of Medicine.

Rose could have benefited from this research in 2020. It took more than a year to find doctors who would take her cluster of symptoms seriously. She eventually found that team at Boston Children's Hospital.

“I went from running a junior Olympic qualifier to being unable to walk,” Rose said. “It was dramatic and confusing.”

Missing 'whole boat' of data

Despite the new research, health experts say a great deal is still unknown about long COVID.

For example, most of the data from the study comes from patients who were infected with earlier COVID-19 variants, not the latest version of omicron, said Dr. Alexandra Yonts, a pediatric infectious disease specialist and director of the post-COVID program at Children’s National Hospital in Washington, D.C.

The study suggests kids infected with omicron are less likely to develop long COVID, however, Yonts argues there isn't enough data to support that theory since omicron hasn't been on the scene long enough to allow for robust long COVID data.

"If we’re looking at kids that have been newly infected (and) what is their risk of becoming long COVID patients?" she said. "We’re missing that whole boat."

Authors of the JAMA study say their next research will be long COVID symptoms in children 5 and under. Yonts said the most urgent need for these patients is access to post-COVID clinics that specialize in identifying and treating lingering symptoms from a COVID-19 infection. She said these types of efforts are beginning to close down across the country due to a lack of funding and support.

"These are such complex patients," Yonts said. "It's hard to find a multidisciplinary team that can define those symptoms and support them."

That's why Rose, a California native, eventually moved with her family to southern Maine so they could be driving distance from Boston Children's Hospital, where she visits the long COVID clinic at least once a month. In addition to doctors at the hospital's specialized COVID clinic, she's seen nearly a dozen specialists including a sleep neurologist, acupuncturist, gastroenterologist, endocrinologist, rheumatologist and cardiologist, among others.

Rose is disheartened that post-COVID clinics are shutting down for patients like her, but not completely surprised. She sees the world moving on from the pandemic, but she's still in pain. She hopes the JAMA study brings renewed attention to the condition.

"There’s this illusion now that lockdown is over, that COVID is gone," she said. "It’s really, really difficult and invalidating for all the people with long COVID – especially children."

Adrianna Rodriguez can be reached at adrodriguez@usatoday.com.

This article originally appeared on USA TODAY: Teens and kids with long COVID are showing surprising new symptoms