Even connected parents struggle with polio-like acute flaccid paralysis

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By Maggie Fox

Dr. Riley Bove knows about nerve damage. She’s a neurologist, specializing in multiple sclerosis and trained at top medical schools.

Yet Bove had to fight to get help for her son Luca in 2014 when he developed what’s now known as acute flaccid myelitis — the polio-like syndrome that paralyzes or weakens muscles, sometimes permanently.

Bove and two other parents described their ongoing struggles with AFM, from getting doctors to take their children’s symptoms seriously to the day-in and day-out slog of treating children with crippling and irreversible nerve damage. They decry delays in research that could lead to better treatments and the continued lack of education about the problem across the medical profession.

Four years after it was first widely identified, acute flaccid myelitis remains a challenge to doctors and public health officials. The Centers for Disease Control and Prevention said it looks very much like a virus — probably more than one — that is either attacking the nerves or setting off an autoimmune reaction that damages nerves. But the CDC says there is still not a single clear cause for the condition, which has been conclusively diagnosed in 116 patients so far this year.