How vulnerable are kids to long COVID?

Holly Olson calls COVID-19 a “crazy, wild journey” that’s been hard to shake for her Layton, Utah, household. She and her husband, Steve, and their kids were all sickened by the virus four years ago, with different symptoms and 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 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 to 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 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 to 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, mean age 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 also changed, though it’s obvious many struggle. It’s estimated 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 symptoms terrible and refutes the idea 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, 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 from 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, 21, a former swimmer who could outlast anyone at breath holding, developed breathing problems so severe 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, 18, mostly lost 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 long COVID’s toll. 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.

The ‘art’ of persuading Congress

Long COVID Families and doctors who treat the condition hope Kennedy keeps that promise. Securing research funding was among their goals when Carmilani, Yonts and others, including children with long COVID and their families went to Washington, D.C., in late July to meet with congressional staffers. They were armed with facts and figures, personal stories and artwork by children showing how long COVID makes them feel.

They literally paint a picture of suffering.

Zeke Smith’s family was among those visiting congressional offices. Now 11, he’s had long COVID for three years with no end in sight. He gets a little better and settles into school — he’s lucky his school understands the issue, his mom, Megan Smith said — then long COVID recurs. His academic life has been minimal due to extreme exhaustion, gastrointestinal issues and anxiety that tie into his post-COVID flares. He now homeschools to take advantage of moments when he feels well enough to learn. His COVID was mild; its aftermath has been debilitating.

He was so tired the day they visited lawmakers’ offices that he could barely speak. He sat quietly, his mom telling his story. The visits went so well, the group was invited to talk to more congressional offices in September.

As for how Zeke is doing now, his mom said, “He’s not moaning. He’s not in a fetal position. And he’s talking normally. Those are low bars, but are a big deal to us.”

Carmilani believes a new COVID wave is beginning and in a month or so, more long COVID cases will emerge. “The research coming out is not quite breaking through,” she said. “But you have to see the problem to solve the problem. I believe research is the answer. The impact of reinfections on growing bodies is still an open question.”

Bills introduced in 2023 and 2024 went nowhere, but she thinks legislation is needed — a message they took to Congress. As time passes, some of the children get better. But what they regain can be wiped out by reinfection.

No uniform symptoms

Primary Children’s Hospital’s website describes long COVID as “persistent or new symptoms that develop after a probable or confirmed case of COVID-19. According to the World Health Organization, these symptoms usually occur within three months of the initial infection and last for at least two months without another cause for the symptoms found. Common symptoms include tiredness, shortness of breath, ‘brain fog’ or difficulty concentrating, dizziness, muscle or joint pain, weakness and difficulty with exercise. These symptoms can be severe enough they affect your daily activities.”

Christine Maughan, of Logan, Utah, went to Washington with the group. She describes her long COVID as like catching the flu repeatedly. “Tired, can’t function, everything hurts,” she said, noting she developed an allergy-like reaction that’s not uncommon and a condition commonly called POTS, which also affected Zeke. With postural orthostatic tachycardia syndrome, sitting up or standing causes one’s heart to race, triggering symptoms like dizziness, fatigue, fainting, headaches, blurred vision, nausea, shortness of breath, discomfort during activities, brain fog and gastrointestinal issues. POTS strikes children and adults.

“Dealing with this as an adult is hard,” Maughan said. “I can’t imagine what it’s like for a child.”

Brown treats adults, but sees “mostly women who got it in their teens.” They seek care for dysregulated blood pressure, fatigue and brain fog, among other symptoms. Long COVID often includes exercise intolerance and post-exertional malaise (PEM). She said folks with PEM can be “pancaked” by getting out of bed to go to the bathroom or get something to eat. They’re beat.

Of those who had long COVID, about 20% will be symptomatic at a year, she said. Two years out, some say they’re 85% or 90% better. Along the way, some improve, others relapse.

Very few clinics specialize in children with long COVID, who have a huge range of symptoms from losing taste and smell to sleeping 20 hours a day. The latter forfeit a chunk of childhood, as Zeke Smith has. It’s not a normal path for children, Yonts said.

Symptoms tend to cluster by age, with some variation, per Yonts. Under age 5, long COVID acts like the acute illness but drags on for months. School-age kids have less fever, less POTS and more breathing issues and anxiety. Adolescents are more like adults, including gastrointestinal symptoms. One pediatric patient comes in with fatigue, another with headache, fatigue and chest palpitations. She sees kids with nausea and vomiting. A parent may say the child’s memory isn’t working the way it did.

Little is known about why some get long COVID and others don’t, these experts agree. Brown said people with hypermobile syndrome — joint pain and stiffness, frequent sprains and dislocations, and a tendency to fatigue easily — seem more prone.

Maughan knows managing symptoms improves quality of life. She also said living with long COVID involves tradeoffs: If I do this, will I have energy to do that?

“I think in terms of pediatric long COVID, awareness is key. We need more research into pediatric long COVID. We need to help them.”

“I think patients struggle with it because it’s one of those invisible disabilities. … You’re in the prime of your life, and it can be really hard when people don’t understand, because you look fine," Brown said. “We have real findings that are not normal. I think one of the gifts we’ll get from COVID is understanding things like fatigue and viral syndromes over time.”

Lack of recognition, understanding

Lisa O’Brien, of Roy, Utah, founded Utah COVID Longhaulers in June 2020 as she saw people “pour into” Facebook groups seeking help or information because they or a loved one survived COVID but then got sicker.

She reached out to lawmakers and health experts to see who could help and how. “No one would listen to me.”

O’Brien had long COVID for more than two years, barely and rarely able to get out of bed. When she tried, her heart went wild, 160 beats or more per minute. Eventually, she got heart ablation for atrial fibrillation. Her hair was falling out and she felt “internal vibrations.” She said she’s now 90% better.

Her children didn’t get long COVID, but lived with hers, driving her to the hospital at odd times and worrying. She found care providers who recognized the need to look into long COVID and started learning alongside doctors who now see long COVID patients regularly.

She said she didn’t know a nervous system can malfunction, but hers did. “I was healthy most of my life. My takeaway is this is real and debilitating for a lot of people; they’re not faking it. They want their life back. There’s not a lot of research, not a lot of funding and no cure. If you don’t know what causes it, how can you cure it?” O’Brien said.

Carmilani fears public health officials only watch hospitalizations and deaths. Most children aren’t hospitalized with it and symptoms are hard to identify in kids unless you know what to look for. Diagnosis relies partly on a patient’s ability to describe what’s happening, disadvantaging kids.

It’s not uncommon for medical providers to look at symptoms and diagnose a mental health problem that’s really long COVID, she said.

Carmilani said evidence suggests getting a vaccine reduces the chance of long COVID. But she’s not sure parents have been told enough to make informed decisions. “From what I can tell, no one is explaining the risk of long COVID,” which may now be the top chronic illness in children, per Carmilani. Those most severely affected may need wheelchairs or fail to thrive. Yet children are penalized for absences because it’s hard to get notes from doctors who don’t recognize it.

There’s also a stigma attached that doesn’t belong, she said, driven by politics and misinformation. “Speaking publicly about a child’s long COVID can invite harassment, bullying and denial. Until the cost of telling the truth is no longer paid by children and their families, most will remain silent,” she said.

The Olsons were a mixed-vaccine family when their COVID journey began. Holly Olson was vaccinated but later decided she wasn’t sure she trusted the mRNA vaccine. Her youngest children have not had the COVID vaccine though they’ve gotten all their other shots. A nurse, she said she’d reacted badly to it. Her two oldest were vaccinated, her two youngest were not. They all got COVID anyway and long COVID has not favored them over the others. It’s just been different.

The family changed diets and learned to manage symptoms and fight for the care they need. And speaking of care, they’ve learned not to care so much that in their misery they sometimes felt “censored and shunned” by people who don’t believe kids get long COVID.

Healing and looking ahead

The Olsons are doing better than they were when long COVID first hit. “As time goes on, our bodies are healing, but they still have flares suddenly if they get a cold or something,” Holly Olson said. This family that loved to hike and be joyfully out in nature doesn’t venture that way much now. Their muscles don’t repair themselves the way they did.

Olson said she’s a positive person, in more than one sense. She’s positive, as in upbeat. And she’s positive that long COVID is real. She’s less sure about the mRNA vaccine “because of what happened to us.”

“I see both sides; my heart hurts for everybody that’s hurt. I feel like we need to come together and unite,” she said, noting data and research will lead to a treatment. Right now, everyone’s fighting about what’s true and what’s not. She said research — funded and well-executed — could provide those answers.

Correction: In an earlier version of this story, Steve Olson was misidentified in the photo captions.