A new M Health Fairview clinic is confronting an exhausting disorder that has afflicted more children since the pandemic and caused alarming spikes in heart rate, blood pressure and breathing.
Dr. Matthew Ambrose said it is disheartening to see so many more cases of the condition known as POTS. But the increase at least spurred awareness, and accelerated plans for a clinic in Minneapolis that can better diagnose and treat children who in the past were dismissed.
"Sometimes they're being told outright that they are making it up, that it's all in their head," said Ambrose, a U pediatric cardiologist and the clinic's director. "It's really dispiriting to hear. They can't even be at school because they are too tired."
POTS emerged prior to the pandemic in about one in 500 children and young adults, usually after infectious diseases triggered overly aggressive responses by their immune systems. So doctors weren't shocked when POTS became more of a problem during the pandemic. An estimated 96% of Minnesota children had been infected by the end of 2022 with the coronavirus that causes COVID-19, based on a federal review of pediatric blood samples, creating a huge risk pool for the development of the disorder.
The condition bears similarities to long COVID, the lingering cognitive and physical problems that people experience after coronavirus infections, but with at least one distinguishing characteristic. POTS is short for postural orthostatic tachycardia syndrome, and it is defined by a severe and immediate increase in heart rate whenever people switch positions by sitting or standing up.
Anna Burt, 14, was a bubbly dancer, skier and cheerleader from Sioux Falls, S.D., when she was diagnosed with COVID-19 in October 2020. The resulting exhaustion left her struggling to walk, and often was marked by a pounding heartbeat that raced up to 160 beats per minute.
"Its like a big drum," the girl said.
Burt's mother, Jody, said she felt fortunate to eventually connect with Ambrose, who had observed cases of POTS prior to the pandemic and had taken a clinical and research interest in the condition. Mayo Clinic in Rochester also has specialists who treat POTS, but they didn't have appointments when Anna got sick. Her daughter had developed stomach problems and couldn't sit up, even to ride in the car to the doctor's office, along with episodes of dizziness and pain.
"She really was trapped in the house," her mother said.
Depression and anxiety often occur alongside POTS, so much that they are often mistaken as the causes of children's lethargy, research has shown. Just finding a clinician that believed Anna and her family was vital, her mother said. "We weren't getting that. Most of the time, we were getting, 'its just constipation.'"
Drinking water can reduce POTS flareups, and regular exercise and physical therapy can help patients regain function, Ambrose said. But patients often need poorly understood and even controversial medication regimens. Naltrexone treats opioid addiction but appears to reduce POTS-related fatigue. Steroids regulate water and sodium levels and can prevent or reduce attacks.
Paradoxically, beta blocker drugs that lower blood pressure were thought to worsen POTS, but studies show they help. POTS is related to the autonomic nervous system, or the portion of the nervous system that controls subconscious functions such as heart rate and body temperature.
The drugs temper the body's reaction to signals from that system, Ambrose said. "It's like being at a rock concert but wearing hearing protection."
The clinic's goal is to package together treatments that patients and families often struggled to access separately, and to keep tabs on patients through online check-ups and counseling. By following patients over time, the clinic also hopes to prove which treatments work best and how much progress children with POTS can expect to make.
"When I tell people I think we can get them to a place where they are fully functional, I mean it," Ambrose said. "But it does take work and time and trial and error ... and an Avengers Team of physical therapists."
The clinic sometimes looks for little successes, Ambrose added, giving fluid infusions to one recent patient so she had the energy just to go to prom.
Anna Burt has progressed from a wheelchair to braces to walking on her own, but she still can't run without exhaustion. She has replaced her old pursuits for now with swimming and archery. As a fidgety girl with sensitive skin, she has invented a non-irritating slime toy that she plans to sell under the brand Rainbow Slime.
She said her pain and other symptoms are under better control now, as long as she keeps up with therapy exercises and remembers her medication. She rides a recumbent bicycle at home for exercise and has returned to school for her English and writing classes. Changes day to day are imperceptible, but Anna said she has made long-term improvements and dreams of getting back to old activities.
"Sometimes I get sad. I'm just tired of doing this over and over and over again, but I wouldn't change the experience I had," she said. "Definitely a lot of parts suck, like most of it, 99% sucks. But I wouldn't be who I am now without it."
