Many parents were set on edge in 2018 as cases of what would become known as acute flaccid myelitis (AFM) began coming to light. Symptoms include rapid onset of muscle weakness and paralysis, leading to concerning headlines about a mysterious "polio-like" disease.
Research since then has shed more light on the disease, including that it follows a two-year epidemic curve. The first formally identified cases date to 2014, followed by major spikes in 2016 and 2018. That means cases could spike this fall.
While cases are identified all year long, the majority tend to occur between late May and early November, according to Ben Kerrey, MD, attending physician in the Division of Emergency Medicine at Cincinnati Children's.
"This is still relatively rare. In 2018 at Cincinnati Children's I believe we had 10 confirmed cases," Kerrey points out, encouraging parents not to be overly worried about a possible spike. In fact, he says of last week, Children's had yet to see any cases this year.
"It's not something you need to be walking around fearful about," he says. "It's also not a subtle diagnosis for a parent. This isn't something you would be wondering 'Does my kid have acute flaccid myelitis?' You might not know they have that but you would know right away that there is something suddenly and dramatically different about your kid."
AFM is a serious illness affecting the nervous system, generally in children ages 3 to 10. It's related to a viral infection that triggers an abnormal immune response in some children leading to changes in the spinal cord and brain that can cause sudden weakness in the arms and legs. The latest research indicates it is linked to the virusenterovirus D68 (EV-D68).
"While AFM has been called a polio-like illness, doctors say it's not polio," Children's states in a release. "In severe and rare cases, AFM will impact a child's breathing muscles causing them to become weak or paralyzed which is why doctors say it's important to seek help right away."
Kerrey agrees, saying if you're worried your child has AFM you should take them to Children's immediately.
If there's a silver lining to the current coronavirus pandemic, it could be that safety measures like social distancing, face coverings and increased hand washing could potentially mean fewer cases of AFM. Any evidence to that is anecdotal, Kerrey says, but he notes he and his fellow medical professionals agree "it's weird" that they haven't seen even one suspected case.
Kerrey reiterates that AFM is sudden onset and distinctly different than the coronavirus. Unlike with some COVID-19 symptoms, you won't be wondering if something is wrong.
"That's what we're all going through, 'Do I have COVID? Does he have COVID? Does she have COVID?' Just because we have common, everyday symptoms. This is not that. This will be dramatic and clearly wrong."
Alex Voland's 5-year-old son Elijah Peacock lives with AFM. He was diagnosed in October 2018 after she rushed him to Cincinnati Children's with sudden paralysis in his legs. After intensive therapy and treatments, Voland says Elijah is now down to one day a week of therapy.
"It's been a roller coaster and it hasn't always been great," she says. "With this being my son and all the unknown factors, it's been pretty scary but joyful at the same time, seeing what he is capable of doing and seeing the different things he's accomplished in this short time that we were told he would never be able to."
Elijah needs the support of a walker and he gets fatigued easily. He often crawls to get around and uses a wheelchair.
"His upper body strength is out of this world. He looks like a little baby body builder. He can pull himself up on counters and open closet doors just by pulling himself up with his upper body and locking his knees out," she says.
Voland expects this is Elijah's "new normal." He had a nerve transplant that has helped, she says, but it didn't make the muscle mass return that's needed to functionally walk.
Behavioral therapy is also key, according to Voland. She recommends it for children dealing with AFM. "(AFM) was a really big shock to him. He was a walking, running, crazy kid and the next day he was not able to walk so I think that mental health services with illnesses related to this ... it's really super important to get them into a therapist to work through what happened to them."
Of course, dealing with AFM during the pandemic hasn't been fun either. "It kind of feels like hitting another Bingo block of the year of 2020," she says.
Voland is studying for a job in public relations so she's been open to working with Children's to make herself available to the media to talk about AFM and her son's experience. However, COVID-19 doesn't make that job much fun, she says.
"Telling people the kids are going to get sick on top of everything else that's already happening in the world, it hasn't been a warm feeling to be like 'Yeah, your kid might get sick.' It's a lot of weight to bear knowing this and knowing what could possibly happen to my friends' kids or his classmates."
