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SOUTH FAYETTE (KDKA) — Instead of playing sports like a lot of 6-year-old boys, Bryson Ackermann is going to weekly therapy sessions, trying to get his life back.
The South Fayette first grader used to be very active, but everything changed on Oct. 15 of last year when Bryson was diagnosed with Acute Flaccid Myelitis, or AFM. Bryson’s mom, Jill, vividly remembers the day he started to feel sick.
“We went out to dinner that night. He was fine. Then, the middle of the night Saturday into Sunday, he was up, vomiting, just once that night. The following day, he just laid around the couch all day. He didn’t really want to do anything,” Jill Ackermann said.
AFM hit Bryson hard. He went back and forth between the PICU at Children’s Hospital and inpatient rehab for months, struggling with breathing and partial paralysis.
“He wasn’t able to walk, he wasn’t able to move his head, he wasn’t able to use his arms, he wasn’t able to sit up. He wasn’t able to roll over,” Jill said.
“I remember meeting them and they were in shock,” Dr. Andrew Nowalk said.
Dr. Nowalk has seen a number of kids with AFM, including Bryson. Dr. Nowalk is the Director of Infectious Diseases at UPMC Children’s Hospital.
Even worse, there’s no specific way to treat it because no one seems to know what’s causing it.
“There’s so much we don’t know about AFM. It’s very, very frustrating. We think it’s associated with a family of viruses called Enteroviruses, but even this year when the CDC looked, it was not just Enteroviruses that seemed to affect the children,” Dr. Nowalk said.
Even more baffling is the pattern of AFM cases. It’s popped up in waves over the last five years. Last year was the worst year with more than 200 confirmed cases in 40 states.
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Bryson finally came home a few weeks ago, but the work is not over. During his therapy sessions, he first meets with an occupational therapist. Then, it’s time for physical therapy. He also meets with a personal trainer a few times a week.
After being on a feeding tube for an extended period of time, Bryson’s also learning how to eat, again. He lost 15 pounds, a lot for a 6-year-old boy, but he’s already gained most of that back.
What Bryson says he’s missed the most throughout this journey?
“I miss being on the higher [basketball] hoops,” Bryson said.
His mom hopes he’ll get back there someday, but she knows he still has a long way to go.
“All they really tell us is it’s going to be a marathon, not a sprint,” Jill said.
Bryson’s parents are also looking into getting him a nerve transfer surgery at Shriner’s Hospital in Philadelphia. They hope that surgery could get some of his muscles working again.
As far as making any headway, Dr. Nowalk said there’s intense research going on around other medicines that might help improve the outcome of AFM, but as of right now, there’s still no treatment that’s shown to work really well for AFM patients.