Back in May 2016, Amanda Gary’s daughter came down with a cold.
The whole family had a cold and Sophia, 2½ at the time, had had colds before, so Gary didn’t make much of it.
“Then she woke up one day and said, ‘Mommy, I can’t walk,’” recalled Gary, of DeBary. “We were trying to stand her up and she’d collapse.”
It took several months, lots of research and finding other parents online before Gary took Sophia to see a Dallas specialist, who finally confirmed her diagnosis: acute flaccid myelitis or AFM. Federal health officials this week sounded an alarm over an increasing incidence of AFM.
Its hallmark symptom is the rapid onset of weakness in arms or legs. Most patients have a respiratory illness like a cold before the neurological symptoms set in. The condition mostly affects children.
There are currently no treatments for it and it’s not clear how parents can prevent it.
“Be aware of the symptoms of any weakness in children,” advised Dr. Vikram Prakash, a pediatric neurologist at Arnold Palmer Hospital for Children. “Early intervention might be something that’s helpful.”
Health officials also advise parents to stay up to date with their child’s immunizations, to wash hands often and avoid mosquito bites.
AFM is not new, but the Centers for Disease Control and Prevention started keeping track of it in 2014 when, for an unknown reason, there was a noticeable spike in the number of cases.
Since then, the agency has received information about 386 confirmed cases, mostly in children.
So far this year, 62 cases of AFM have been confirmed in 22 states, including at least seven cases in Washington state, 10 cases in Illinois and one case in Florida.
AFM is rare. Less than one in a million people in the U.S. get AFM each year, according to the CDC. But it can be a serious, debilitating disease. Long-term effects of the disease aren’t yet known. Some patients recover quickly and some need ongoing therapy for paralysis.
Sophia, whose right leg was affected, still wears a below-the-knee brace to walk — despite ongoing regular physical therapy and a rare nerve-transfer procedure.
“We have a lot of anger toward the CDC,” said Gary, 37, speaking as a member of the AFM parent community. “We believe they could have done more to get the word out to hospitals and start working on a vaccine.”
Health officials don’t downplay the severity of the disease but also ask parents to not panic.
“There is not an outbreak of AFM,” said Dr. Mobeen Rathore, chief of infectious diseases and immunology at Wolfson Children’s Hospital in Jacksonville, where a 3-year-old girl was diagnosed with AFM and is under care in the ICU.
“We had a case in 2016 and we did not see other cases and any other problems,” Rathore said. “But in other states, there are clusters of cases.”
Diagnosing AFM can be tricky, in part because there’s no known cause for the illness. AFM has been associated with viruses, environmental toxins and genetic disorders, but scientists haven’t been able to pinpoint a common cause.
AFM mainly affects the spinal cord and causes weakness in one or more limbs. MRI images reveal lesions one or more parts of the spinal cord. But other neurological conditions, including Transverse Myelitis, Guillain-Barre Syndrome and West Nile virus infection, also cause lesions on the spinal cord, making it difficult for physicians to make a quick and definite diagnosis.
“It’s very frustrating,” said Prakash, who’s new to Orlando but has diagnosed the condition in his previous job in St. Louis. “We don’t know if it’s a virus or an autoimmune process that’s secondary to the virus.”
Patients are sometimes misdiagnosed with Transverse Myelitis or Guillain-Barre Syndrome and later diagnosed with AFM when they don’t respond to standard treatments.
Sophia, for instance, was first diagnosed with Transverse Myelitis and was given steroids. She had regular physical therapy but made little progress.
But since the illness doesn’t have a treatment, it’s still not clear what impact early, accurate diagnosis can make.
“Even if you diagnose it, you’re managing symptoms,” Rathore said. “If you miss it, you’re not missing a treatment.”
What’s known is that AFM is that it’s not caused by the poliovirus, which has been eradicated in the U.S.
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Although there has been at least one confirmed AFM case each month since 2014, it’s too soon to interpret a trend, according to the CDC. Also, reporting of AFM is still voluntary in most states, so it’s not clear how many cases have gone unreported or misdiagnosed.
“[The CDC] should make AFM reporting mandatory,” said Gary, who also has a 2 ½ year-old daughter. She said based on the size of a Facebook group for AFM parents, the numbers are likely higher than what’s been confirmed nationally.
CDC officials say they’re investigating AFM cases and working with state and local health departments to increase awareness about the disease. The agency is also urging health-care professionals to be vigilant about the possibility of AFM in patients.
In the meantime, Gary and parents like her are sharing their stories publically to raise awareness about the condition.
“Maybe research can hurry up and catch up and cure these kids. I’m sure there’s something going on that can fix our kids,” she said.
nmiller@orlandosentinel.com, 321-436-9205, Twitter; Instagram; Facebook; LinkedIn.