What we know and don’t know about AFM
When Heather Storrie’s 4-year-old daughter, Elizabeth, came down with a cough last May, Storrie wasn’t concerned.
“She’d had a cough before, she’d had a cold before — but it just never really improved,” said the 33-year-old stay-at-home mom.
Then Elizabeth lost her appetite, started getting dizzy and came down with a fever. Her neck became stiff and painful, the right side of her face drooped and her speech slurred. When her parents rushed her to the doctor, she had to lie on the floor of the car because it hurt too much to sit in her car seat.
It turned out Elizabeth had a mysterious, rare and deadly disease, closely related to polio, called acute flaccid myelitis, said the girl’s pediatrician, Dr. Diane Arnaout of Cook Children’s Medical Center.
The hospital has treated three North Texas patients this year for acute flaccid myelitis, AFM. Arnaout said that while she couldn’t say much about the other two cases due to patient privacy laws, both suffered severe neurological damage.
A fourth patient at Cook Children’s is being reviewed as another possible case of AFM by the Centers for Disease Control. Patients from Collin and Dallas counties are being treated at other hospitals.
The CDC says it is actively investigating the disease and urging healthcare providers to be vigilant.
There have been 362 cases confirmed by the CDC since an outbreak in Colorado in 2014, and 38 so far this year, eight of them in Texas. Almost all of them have been children, the CDC says.
No single pathogen has consistently been detected in AFM patients. The cause of the disease is still unknown.
Symptoms typically begin with sudden-onset weakness in the arms or legs and a loss of muscle tone and reflexes, according to the CDC. Some people will also have a drooping face, difficulty moving their eyes, difficulty swallowing and slurred speech.
In some patients, the muscles that support breathing can become so weak that a ventilator is needed. Iin some rare cases, neurological complications can lead to death.
‘Terrifying for any parent’
The morning of June 4, Elizabeth’s parents brought her to Arnaout’s office in a panic. Fearing the girl had meningitis, Arnaout called for an ambulance to take her to the emergency room, where an MRI exam was ordered.
During the MRI, the radiologist came into the MRI room to look at the images produced while Elizabeth was still in the machine, which Arnaout said shows how urgently staff were treating her condition.
The imagery revealed inflammation along the entire length of the girl’s spinal cord that was caused by a virus attacking her brain stem, Arnaout said.
The first few days after Elizabeth’s diagnosis were the scariest, Storrie said.
“Any parent, when you’re told that your child has a neurological disorder, much less a very rare neurological disorder, that there is not a treatment for, that there’s a possibility that she could not breathe on her own or not walk on her own, that’s terrifying for any parent,” she said.
“I’ve never seen this before; no pediatrician I know has seen this before. I was shocked,” said Arnaout, who has treated Elizabeth since birth.
“Frankly, I have a 4-year-old at home and I couldn’t help but put myself in these parents’ shoes. I don’t think I slept for the whole week because I was so worried about her. Kids with this disease often end up quadriplegic, or dead, or on ventilators. I was terrified about the next few days and what they held.”
There was little for physicians to do but support the girl for the first few days. Remarkably, she started to improve, Arnaout said. She spent 28 days, including her 5th birthday, in the hospital. Now she rehabs four hours a week, mainly trying to recover range of motion in her right arm.
“She’s regaining function, and if you read about AFM, most children decline, decline and decline, and that’s where they stay,” she said. “But Elizabeth has shown remarkable recovery of a lot of the function in her arm, her shoulder, her neck and her face.”
Storrie said, “We just began praying as soon as we got the diagnosis, and every day at the hospital, when we saw that she wasn’t getting worse and when we saw how the doctors were pleased that she wasn’t on the ventilator and that she was still kicking her legs, still fighting, I think it just gave us hope.”
Elizabeth’s case is one of the best-case scenarios, Arnaout said, adding however, “She still really can’t lift her right arm up past her shoulder, or move the right side of her neck as well as she used to. She really had a lopsided smile for a few months.”
Possible cause of AFM
Although no specific virus has been identified as the culprit in AFM infections, an enterovirus known as EV-D68, a close relative of the polio virus, is a suspect, according to the CDC.
“Viruses forever have attacked people’s nervous systems like this, in a similar way, but we haven’t seen batches of it pop up like this until 2014,” Arnaout said.
“To me, as opposed to an environmental cause, or maybe a genetic cause for this, I think it’s infectious, because look how it pops up in little batches,” she said.
Also, 80 percent of children who have been infected ran a fever and showed symptoms similar to a respiratory illness in the early stages, she said.
But Elizabeth did not test positive for EV-D68.
Arnaout said that AFM may prove to be quite similar to the West Nile virus, which causes no symptoms in many patients but can prove debilitating or fatal for a few.
While online anti-vaccination outlets such as NaturalNews.com and The Vaccine Reaction have blamed childhood polio vaccines, Arnaout and the CDC say this claim isn’t supported by the evidence.
“There is absolutely no evidence that AFM is caused by vaccination,” Arnaout said. “In fact, several of the children in America that have suffered AFM have been unvaccinated. Also, AFM follows a seasonal pattern — late summer and early fall — quite remarkably. Why would vaccination-related disease follow that pattern?
“I don’t believe there is any link at all,” Arnaout said. “We saw these types of paralysis a lot more before the days of the polio vaccine. If anything, this horrible illness is a reminder that the polio vaccine has made this kind of thing very rare.”
Texans for Vaccine Choice, a group that advocates for parents to be able to choose whether to vaccinate their children, did not immediately reply to a request for comment.