For some kids, long COVID-19 is harder than having the virus
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Anna Burt has the same interests as most other 12-year-olds.
“Arts and crafts. I like animals. I like hanging out with my family. I like playing video games,” she said.
Her favorite movie? “Star Wars: A New Hope.”
But beneath the surface of her wide smile, Anna said that since she contracted COVID-19 in the fall of 2020, things haven't been the same for her body.
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The fatigue and severe abdominal pain from the virus never went away.
"Even though it looks like I'm normal, I'm still always in pain,” she said.
Anna lives in Sioux Falls, S.D. But for a week in mid-March, she was in Minneapolis for a round robin of appointments within M Health Fairview's pediatric COVID clinic, a place she’s visited often in the last year and a half.
On her schedule were visits with pain specialists to help her manage her headaches and body aches, and a gastrointestinal specialist for her chronic stomach pains. In the past, she's seen a cardiologist for POTS, a syndrome marked by low blood flow and a rapid increase in heart rate.
Neurology, physical therapy and psychology appointments were on the schedule, too.
In some ways, Anna is fortunate to be able to get timely care for her long COVID. She got into the health system when there weren't as many young patients seeking this type of care.
"It was a steady trickle until the last two months, which has definitely opened up the floodgates," said Dr. Bazak Sharon, medical director of M Health Fairview's pediatric COVID clinic.
He said that with this latest wave of omicron, demand for care in the pediatric clinic has skyrocketed. Now there's a waitlist.
Sharon said that in his experience, it's rare for kids to experience long COVID for as long as Anna has. But her symptoms are common among people who have long COVID. And with some estimates suggesting that around 20 percent of the population will have lingering symptoms after they're over the worst of the virus, he only expects to see more cases like Anna’s.
"It's real and the numbers are just going to increase more and more," he said.
Come a long way
Anna's life has changed dramatically since she developed long COVID, said her mother Jody Burt.
"I think it's been a year of adjusting to a new normal,” she said.
Jody Burt quit her job to home-school Anna this year because being in class all day would be too draining. For now, activities — like basketball and dance — are out of the question.
So Anna and Jody focus on what Anna can do instead.
"We try to focus on the ‘can’ and the positive. And so we try to have as much fun as we possibly can,” said Jody.
For instance, Anna is swimming more because it eases her pain. She's started equine therapy. And she's worked hard to learn a host of ways to manage her symptoms through meditation, reiki and massage in addition to taking medication.
“On low-pain days, maybe it's ‘go outside and play in the snow.’ But on really high-pain days, sometimes it's ‘I can pet [the dog], sit up for longer periods of time and read a book for a little while,’" Jody said of her daughter’s activities.
And Jody said Anna has made improvements.
"Initially, she wasn't able to sit up for extended periods of time. So even just now, like this is a big deal for her being able to sit up in the chair for as long as we've been talking. And so she's come a long way,” said Jody.
‘We believe you’
Sharon said Anna’s symptoms share a lot of similarities to other post-viral illnesses like chronic fatigue syndrome — syndromes that haven't been taken seriously by the medical community in the past.
“With chronic fatigue syndrome because it's not a common thing, most doctors have never gone through that themselves, or they don't know anyone who went through that themselves, they never learn about it in medical school,” he said.
Long COVID has helped normalize the symptoms and has helped medical professionals understand them better, Sharon said.
Kids, in particular, are expected to bounce back fast after an illness, said Sharon’s colleague Dr. Matthew Armfield, who is medical director for the pediatric pain and palliative care service at M Health Fairview. And they learn to hide their discomfort well.
So it’s one reason Armfield and his colleagues make clear to their patients that they believe their symptoms.
“Hearing ‘I don’t believe you’ from a medical professional is extremely demoralizing,” he said. “Stress, anxiety — all that will go up and the pain gets a lot worse, and it's a very difficult cycle to break.”
Jody and Anna Burt recall their first conversation with Sharon in early 2021 when he told Anna that he believed her symptoms were real.
“That meant everything,” Anna said. Other doctors had told her it was constipation or that it was in her head. “Just someone believing in us felt amazing."
Retraining the brain
During their visit, Anna and Armfield talked about the connection between pain and stress.
Armfield asked Anna if she knew how pain can create stress and anxiety.
"It sends your pain and depression and your anxiety off the charts and then it goes back and forth and back and forth and back and forth,” Anna said.
The good news, Armfield said, is that Anna is already doing a lot right — the physical therapy, and her ability to use meditation to work through her pain. It's hard, but it's helping. His goal is for Anna is to be back in school in the fall.
“That shows me that you're actually retraining your brain. And that's what needs to happen,” he said. “That just takes time.”
