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What should parents know about acute flaccid myelitis? A Stanford expert explains

A Stanford specialist clarifies misconceptions about acute flaccid myelitis, a rare complication of certain viral infections in children.

Acute flaccid myelitis, a rare childhood condition in which paralysis occurs as a complication of certain viral infections, is back in the news. The disease, often described as "polio-like," began cropping up in small clusters across North America in 2012, and has recurred in alternating years ever since.

Stanford pediatric neurologist Keith Van Haren, MD, who has been quoted in several stories about the condition, is part of a group of physicians who are working to understand the disease. I recently interviewed him to ask what parents should know about it.

Infections with enteroviruses, the suspected culprits behind acute flaccid myelitis, start and almost always end as run-of-the-mill illnesses, with a few days of fever, malaise and congestion, Van Haren said. In very rare cases, this is followed by pain and weakness in a limb or in the face.

"This is broadly true of many infectious neurological illnesses," he told me. "What begins as an otherwise ordinary infection takes a different course in a particular patient, and it’s not understood why."

What should parents do? Encourage kids to wash their hands, take good care of them when they're ill, and keep the overall scale of the problem in perspective, Van Haren advised:

If a child is sick, parents should encourage him or her to rest and provide normal, appropriate nourishment and hydration. If the child or parent is noticing acute weakness or significant pain in one limb, they should seek medical care promptly.

It’s important to remember how rare this disease is. To put it in context, last year there were about 80,000 deaths across the country from the flu; so far this year, there are around 100 or so total cases of acute flaccid myelitis under investigation. Clinicians and scientists are working hard to understand how to make sure it doesn’t become more and, ideally, to eliminate it altogether. Analogous eradication efforts have occurred many times, primarily through vaccination.

He also told me about what physicians are doing to understand the disease, progress that's been made in uncovering the genetic characteristics of enteroviruses, and rehabilitation efforts for affected children.

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