Mystery illness paralyzes children, baffles doctors, worries parents

Get the latest from TODAY

Sign up for our newsletter
By A. Pawlowski

A mystery illness that’s left dozens of children barely able to move has many parents on edge and doctors racing to find answers.

The condition — called acute flaccid myelitis (AFM) — develops quickly and causes weakness in the arms or legs, with the Centers for Disease Control and Prevention confirming it in 107 children in 34 states since August. 

Seven-year-old McKenzie Andersen is one of them. What her parents initially thought was a cold just before Christmas left her mostly paralyzed from the neck down within 12 days. For now, McKenzie can only wiggle her left hand, her feet and use facial muscles.

“She got a cold and now she's never going to walk again. How do you ever get your mind around that? This is so brutal, so devastating and so hard to understand,” her mom Angie Andersen told TODAY.

“She wants me to fix it and make it better, and I can't. It just rips my heart apart every day. … I'm still hoping someday for a miracle, but for now, this is our reality.” While the family waits for the "miracle," friends have set up a Go Fund me page for little McKenzie, hoping to raise $10,000 for her medical care.

MRI scans of the young patients show inflammation of the gray matter — nerve cells — in their spinal cords, preventing the brain from sending signals to the body. Most children with AFM have a fever or a respiratory illness before the paralysis sets in, according to the CDC.

While doctors know what the condition is, they have not yet determined the cause.

“We suspect it’s the enterovirus D68, but we're not sure. We haven’t been able to prove what has caused the paralysis in these children,” said Dr. Teri Schreiner, a pediatric neurologist at Children's Hospital Colorado.

Some, but not all, of the children with AFM were diagnosed with enterovirus, but some cases of AFM pre-date last fall’s EV-D68 outbreak in the U.S.

Doctors also can't say if or when the kids will get better.

"The prognosis for this, unfortunately, is challenging because these cases are new," said Dr. Steven Janselewitz, a pediatric rehabilitation specialist at Randall Children's Hospital in Portland, Oregon, who has been treating McKenzie.

What makes acute flaccid myelitis peculiar is that it doesn’t follow the typical pattern of other neurological illnesses, said NBC News medical contributor Dr. Natalie Azar. Some kids, like McKenzie, are paralyzed from the neck down while others just experience weakness in an arm or leg.

“It’s horrifying to watch this — as a parent, especially,” she told TODAY’s Natalie Morales and Willie Geist on Wednesday.

“We really don’t have any tried-and-true therapies because we can’t really treat if we don’t know what’s causing it. We don’t know if it’s a direct problem with the virus or if it’s actually the patient’s immune response to the virus that’s triggering this inflammation.”

Since doctors know so little about the virus, there are no known preventative measures at this point to recommend to parents, Azar said. It's not known how contagious the disease is, so the CDC simply advises general tips for avoiding infection, such as being up to date on all recommended vaccinations, washing hands and avoiding close contact with sick people.

About two-thirds of children with AFM have shown signs of getting better -- such as slight improvement in function in the affected limbs -- but only one has fully recovered, according to the CDC. Doctors are treating the young patients with rehab and physical therapy, and trying out nerve transplants, Azar said.

Doctors treating suspected cases of AFM also are being urged to report those cases to the CDC to help solve the mystery.

Follow A. Pawlowski on Google+ and Twitter.