Back in 2014, as Dr. Riley Bove’s family was just getting over a respiratory virus, her 4-year-old son suddenly developed some very scary symptoms. “He woke up with a paralyzed arm, neck and shoulder,” said Bove, an assistant professor of neurology at the University of California, San Francisco. “I got him right into care. Over the course of the next eight days he continued to get worse and was eventually paralyzed from the face down to his toes.”
It got so bad that the little boy needed help breathing, but after a stint in acute care and then two months in rehab, Bove’s son was finally able to walk on his own. He still has lingering issues from his experience with the polio-like illness called acute flaccid myelitis (AFM)—a paralyzed right shoulder and a weak neck that requires him to wear a brace—but “he certainly had an amazing recovery,” Bove said.
The experience, along with stories she heard from other parents of children struck by AFM, prompted Bove and two other health care professionals to write an article they hope will sound an alarm that will spur the Centers for Disease Control and Prevention (CDC) and scientists from around the country to make a bigger push to better understand the condition.
Bove’s article appears in JAMA Pediatrics along with two others that grapple with AFM, exploring ways that physicians could more quickly diagnose a disease that currently is so rare that few have any experience with it. Though its symptoms look almost exactly like those of polio, that disease was eradicated in the US decades ago, so “there was no one on the lookout for that kind of weakness,” Bove said. “Kids weren’t being examined properly. Some were told it was all in their kids’ heads or they were lethargic because they were sick. Because the medical community wasn’t aware of it, they weren’t finding it.”
The publication of the three papers on AFM in a special issue of the journal underscores the urgency with which experts are starting to view the disease. Though AFM is still quite rare, it’s not inconceivable that the disease could evolve into an epidemic, like polio did in the middle of the last century. The most recent data from the CDC shows 116 confirmed cases among the total of 286 reports under investigation.
The problem for doctors now is that little is known about the disease: why just one child in a family will get it even though all got sick with the same virus thought to be at its root; why it may be on the rise now; what can be done to prevent it.