- Children can develop long COVID, affecting up to 5.8 million, experts say.
- Symptoms vary but can include fatigue, joint pain and neurological issues, impacting life.
- Experts urge better understanding and treatment options as many medical providers lack knowledge.
LAYTON — Holly Olson calls COVID-19 a "crazy, wild journey" that's been hard to shake for her household. She and her husband, Steve, and their kids were all sickened by the virus four years ago, with different symptoms and varying degrees of severity.
Then she and the kids — Jacob, 18 at the time; Megan, 17 back then; Jenna, then 14 and Wyatt, who was 10 — developed long COVID just weeks after what looked like a full recovery, again with different symptoms and severity.
They're each still struggling some.
That's no surprise to Megan Carmilani, who founded Long Covid Families, or to Dr. Jeanette Brown, pulmonologist and critical care physician at University of Utah Health and an associate professor at the university's school of medicine, or Dr. Alexandra Brugler Yonts of Children's National Hospital. She's a pediatric infectious diseases physician and researcher who teaches at George Washington University's school of medicine.
All three encounter long COVID daily in their professional lives. What does surprise them is the notion that kids can't get long COVID. They see it regularly.
The American Academy of Pediatrics and the National Institutes of Health estimate long COVID may have affected up to 5.8 million children, since research says between 1 in 10 and 1 in 5 of the children who recover from COVID later develop post-COVID symptoms. The National Academies of Sciences, Engineering and Medicine, in a 2024 report, found long COVID "encompasses more than 200 symptoms involving nearly every organ system."
The Utah Department of Health and Human Services told Deseret News that in 2022, 9.6% of Utahns said they'd ever had long COVID. In a 2023 study of 11,153 Utah participants, 7.4% had long COVID. Just over 60% were women, with a mean age of 44.2. Health officials didn't provide a pediatric case count.
Yonts said that while the number of COVID infections overall has dropped, it's not clear if the share getting long COVID has also changed, though it's obvious many struggle. It's estimated that around 60% of pediatric long COVID sufferers recover within about a year, leaving 30-40% who keep struggling, which Yonts calls "devastating." Families must learn to work around the impact, treating it as a chronic illness until or unless it leaves.
A parent may quit work to provide care. A child may leave school because it's just too hard to heal and do homework at the same time.
Yonts calls the symptoms terrible and refutes the idea that healthy kids can't get it. Among acute pediatric COVID cases in intensive care units, more than half had no previous condition, she said. Many were "happy, healthy straight-A students, multisport athletes who were never sick a day. Data doesn't show healthy kids don't get it."
Compounding the problem, many medical providers don't know much about long COVID, per Brown and Yonts, so they don't offer great care. There's no specific test or treatment. One manages symptoms and hopes it stops.
"As a clinician, I am trying to get support to make treatments and management more accessible," Yonts said, noting the need for interstate telemedicine agreements so families can see a doctor experienced with long COVID if there's not one nearby.
She said recent numbers suggest "20%-ish" of kids develop long COVID. So while it's true that children don't have as much death or disability from COVID as adults, the effects can be long-term.
Real kids, real struggles
Cody Strong, a student at Utah Valley University, survived both COVID and long COVID. He had post-COVID kidney problems, shortness of breath and chest tightness. Those are gone. What lingers is how different food is since taste and smell have not returned.
He kept long COVID challenges largely to himself. His mom, siblings and doctors knew. But he tried not to complain among friends, he said. He's turning 22 soon and said he's nearing normal after an illness that plagued him for almost three years.
Jacob Olson, now 22, was serving a mission for The Church of Jesus Christ of Latter-day Saints when he developed stomach issues and lost a lot of weight. He fought fatigue and struggled to focus. He was hospitalized twice and also developed swollen, achy joints. He was sent home from the mission for challenges related to long COVID, some of which still flare.
His sister Megan Olson, 21, a former swimmer who could outlast anyone at breath holding, developed breathing problems so severe that her lungs looked like she had chronic obstructive pulmonary disease. Breathing has slowly improved, but she battles fatigue, joint pain and neurological issues that sometimes trigger fevers.
Jenna Olson, 18, mostly lost her taste and smell. Then everything smelled rotten. Her joints now ache and when she stands up, she's very dizzy. She's sometimes nauseous and fatigued. She's had the family's worst long COVID symptoms and, for a time, was nearly bed-bound. She also has more flare-ups.
Wyatt, 14, used to happily play at the skate park all day. He had mild COVID-19 symptoms, too. Long COVID hurts his joints; he feels like there are little shards of glass in them when he walks around — a sensation his mom also endures.
Secretary of Health and Human Services Robert F. Kennedy Jr. sees the toll of long COVID. In testimony before Congress in May, reported by The Washington Post and others, he said one of his sons is "dramatically affected by long COVID." Kennedy emphasized his commitment to ensuring long COVID research continues.
