Katherine Sand, 16, plugged her nose, held her breath and walked down the field at the Boise High athletic complex, counting her steps.
She was demonstrating one of the exercises she had been doing with her speech therapist over the past few months. Normally, people like her can go 80 steps before they have to take a breath, she said. The first time she did it, Sand — a previously healthy and athletic teenager — got to 13.
Sand has been struggling with lasting symptoms since she tested positive for COVID-19 in March, three days before she was supposed to get her vaccine.
She’s gone to several doctors, gotten multiple tests, and is using an inhaler and doing other exercises to help alleviate her symptoms. But they’re still lingering, every time she runs or plays soccer — or even just walks up the stairs. And no doctor she’s seen has been able to say for sure what she is experiencing, why or when it will end.
“It’s hard, because I just feel kind of helpless right now,” Sand told the Idaho Statesman. “Even though I’ve been given a lot of help, with the inhalers and the exercises … it’s still there.”
She added: “It’s just still really scary, like, what’s going on? And even though we’ve talked about possibilities, it’s like, what is it, really?”
A lack of information on long COVID
Long COVID is still something doctors are studying among adults. For minors, the information is even more sparse.
“You could probably count on two hands the number of peer-reviewed, well-designed studies that have been published at this point,” said Dr. Alicia Johnston, a pediatric infectious diseases clinician at Boston Children’s Hospital, referring to studies on kids experiencing long COVID.
Johnston leads a post-COVID-19 clinic devoted to children with lasting symptoms. It’s one of a small but growing number of clinics across the country specifically serving kids and teens. OHSU Doernbecher Children’s Hospital in Oregon also has a clinic specifically serving pediatric patients, as does Children’s Hospital Los Angeles. There are more clinics that serve patients with long COVID, but many don’t specialize in or work with children.
At the start of the pandemic, the focus wasn’t as much on those younger than 18, since they typically experienced more mild symptoms after getting the virus, Johnston said.
Since then, though, researchers and doctors have started looking into these lingering symptoms that can last months after kids test positive for the virus — even among those who have mild symptoms initially or are asymptomatic.
Fatigue is the most common symptom, Johnston said. Beyond that, the clinic has seen a wide range of issues ranging from brain fog, concentration issues and headaches to chest pain and shortness of breath. Children have also reported muscle and joint aches, alterations to their taste and smell, and abdominal pain.
“It really runs the gamut,” Johnston told the Statesman. “And as far as severity goes, there’s really a spectrum.”
Some patients have one or two symptoms. Others have more than 10.
Doctors don’t yet have a good idea of how common this is in kids. There have been many small studies that have shown a wide range of numbers. But Johnston said that even if only a few percent of the kids who get COVID-19 experience these lingering symptoms, that could equate to more than 100,000 of the 5.5 million-plus who have been infected with the virus, according to data from the American Academy of Pediatrics. Children make up about 16% of all cases.
Dr. David Pate, former president and CEO of St. Luke’s Health System, said it’s also difficult to determine how prevalent long COVID is among kids partially because there is not yet a formal case definition for it and partially because there is no reporting requirement.
Kids also aren’t always capable of describing their symptoms, making it even more difficult to quantify the number of long COVID cases.
“We don’t know for children how many children in the world have it, how many in the states have it or how many in Idaho have it,” Pate said. “ … I think over the next year, we’ll learn a lot more and have a lot better idea.”
Identifying and treating long COVID symptoms
Johnston predicted there could be an influx of kids later this year reporting lasting symptoms, following the current surge in cases. Most students in Idaho went back to school last month, many without mask mandates, distancing requirements or other mitigation measures. Districts have already reported hundreds of cases among students, and kids younger than 12 still don’t have the option to get vaccinated.
“I expect as numbers increase in kids because of the delta variant and because of lack of vaccination in the smaller kids that we may see another big surge,” Johnston said. “November might be tricky.”
Since every child’s experience is different, the approach to treating children varies, too. At the multidisciplinary clinic, which formed in March of this year, patients are evaluated and referred to subspecialists for their specific symptoms. The clinic helps to make sure there is good communication and coordination, and makes it easier to track long COVID in kids.
Treatment is focused on trying to alleviate each individual symptom, Johnston said.
“There is no pill or a medication that makes this go away,” she said. “It’s a slow process.”
The clinic has seen patients from across the country, but Johnston said this kind of care could be particularly hard to find in rural areas. Many families don’t have the resources to go to a clinic specifically devoted to studying long COVID in children.
Even though there’s a lack of research on the issue now, more money is being put toward studying long COVID in kids and adults. The National Institutes for Health announced earlier this year it was putting millions of dollars toward supporting “large-scale studies” on long COVID, including in pediatric populations.
To kids experiencing lingering symptoms, Johnston said the first thing she would do is validate their experiences. Sometimes, people experiencing these symptoms can be told it’s all in their head, she said.
And there are reasons for kids to be hopeful, she said.
There are similarities between symptoms kids with long COVID are experiencing and those seen for chronic fatigue or post-viral syndromes.
“The rule is, they get better,” she said. “It takes time. It can be a really long, hard journey. But in general, kids are resilient.”
She can’t say for sure what will happen with kids experiencing lingering symptoms from COVID-19, since it is still so new. Some kids have returned to their baseline. Others haven’t.
“But we’re optimistic that kids will follow a similar path to those kids with other post-viral symptoms,” Johnston said. “… We’re optimistic that kids will recover from this.”
Pate also encouraged people to vaccinate their children as the vaccine is approved for them (12 and older for now). Vaccinations greatly reduce the risk of serious illness from the virus and — based on data from adults — it could reduce the chances of long COVID, he said.
‘Something’s not right’
Sand has experienced firsthand the impact that the lack of information can have on youth experiencing long COVID.
She had been careful throughout the pandemic. She was never too worried about herself. She figured if she did get the virus, it’d be pretty mild. But she wanted to protect her family and those around her who were more vulnerable.
“I feel like I had lasted a whole year without getting it,” she said. “And then kind of when I thought it was over, or like I was kind of invincible toward it, I got COVID.”
She tested positive during spring break last school year — just before she was supposed to get her first dose of the vaccine.
Her symptoms at first weren’t bad. It mostly felt like a cold. But she knew something was wrong when she tried to go back to running and playing soccer shortly after her time in isolation was over.
“Immediately, I had this major chest compression and chest pain, so I had to stop,” she said. “And then I told my coach, and I was like, something’s not right.”
That set off a series of visits to different doctors and specialists who were all trying to figure out what was wrong at a time when so little was known about the lasting effects of COVID-19 in kids.
Doctors, tests and few answers
Following that first practice back, Sand went to her doctor. He couldn’t give her much information at first.
“He was like, ‘I’m not really sure what’s going on,’ ” she said. “… It’s still kind of like an unknown thing, just because COVID is so new, and a lot of kids don’t have these after symptoms.”
Her doctor suggested they run some tests.
She was tested for blood clots, a side effect that has been seen in adults who get the virus. She was clear.
Then she was referred to a pulmonologist, where she did a series of breathing tests and had an echocardiogram on her heart. Those were all fine, too.
For the first few months after having the virus, she had a doctor’s appointment about once a week, she said. She had to miss school as she went to all of her appointments.
“Every doctor I had seen was like, ‘We haven’t really seen this in a lot of kids, mostly adults,’ ” she said. “They were confused why I was having symptoms still.”
It “freaked me out” at times, she said.
“It was just kind of nerve racking,” she said, “like why am I experiencing this?”
Her doctors think she has a form of COVID-induced asthma, vocal cord dysfunction or a mixture of the two, she said. Vocal cord dysfunction involves the vocal cords not opening correctly, according to the American Academy of Allergy, Asthma and Immunology. This makes breathing difficult.
She’s now on two inhaler medications and still has inflammation in her lungs.
She sees a speech therapist every few weeks, where she works on opening her vocal cords and doing exercises.
But things still feel scary and unknown. She doesn’t know why she’s still having symptoms, and doesn’t know when they’ll go away.
“I feel like I still don’t know what it is. And they don’t either,” she said. “It could be part of something … or a bunch of different things or something completely that we haven’t even looked at.”
Lasting effects impact sports performance
Her symptoms have gotten better since first experiencing them last school year. But she’s not close to where she was before she got the virus, she said — “nowhere near.”
It’s been frustrating.
“It just took me a while to get back to it,” she said. “And my motivation is down because I’m not doing as well.”
During cross country, she’d typically be able to talk with her friends when they go for runs. But now, she can only really listen, creating some distance from her team.
When she’s running, her friends have come to asking her, “how many cans of corn?” That’s how she thinks about and measures — in simple terms — the pressure in her chest. Her teammates are supportive, she said.
“They’re always watching out and looking out for me,” she said. “But it’s just much harder and some days are worse than others.”
And she’s not back to reaching or beating her previous personal records in cross country. That’s one of the hardest parts, she said. Her coaches and parents had a lot of hope that she was going to excel this year, she said.
“I was doing so well before COVID. And then it was just like, kind of a disappointment, like all around,” she said. “Definitely for me … and my parents aren’t mad at me or anything, and they completely are supportive of me, but it’s just, I feel that sadness for me that I can’t perform the same.”
Petra Hoffman, a junior at Boise High School who participates in track and cross country with Sand, said before getting COVID-19, Sand would beat Hoffman in every race. Since getting the virus, though, Hoffman has watched her friend — who is highly competitive and pushes herself to the max for every race — struggle to get back to where she was.
“I keep optimistically telling her, this is just a phase, this time you’ll beat me,” Hoffman said. “I see her struggle, and I see how much it hurts her and her confidence in running.”
Sand’s symptoms continue to impact her everyday life. They are brought out more when she’s running or playing soccer, but she might also experience shortness of breath when she’s reading out loud with a mask on or walking up stairs.
She also feels pressure in her chest often. And it can impact her schoolwork, too. She has experienced brain fog and has trouble focusing at times, she said.
Hoffman said seeing what Sand has gone through has changed her perspective on the virus.
“I think teenagers often think that they’re indestructible,” Hoffman said, “but to see that, no, this is something that is affecting everyone and still so serious.”
It’s scary in a similar way to why climate change is scary, she said.
“It just feels like this big, inevitable thing that is hard to control and understand and that there’s so much mixed information about,” Hoffman said.
But she’s hopeful Sand will get better.
“I’m so excited for her to be able to beat me again,” Hoffman said, “and I know it’s coming.”
Idaho athlete’s message to others about COVID-19
Sand encouraged other young people to take the virus seriously.
Her other main message: If you’re not vaccinated, get vaccinated, she said.
“I was really afraid (of COVID-19). But I was more afraid for my parents and grandparents rather than me, because I just assumed I’m a kid, I’ll get over it if I get it, which was not the right mindset,” she said.
“And I think every kid should have the mindset that it’s a serious thing and it can really affect your whole life.”
Becca Savransky covers education for the Idaho Statesman in partnership with Report for America. The position is partly funded through community support. Click here to donate.