Reid Peteet scoots around on his bottom in the living room of his Winder home as he plays with a toy train set.
When it’s time for school, his mother, Jennifer, helps the 3-year-old into a black wheelchair with blue and green bars on the frame and a red Lego robot keychain attached to the headrest.
Reid is among more than 550 children who have been diagnosed with acute flaccid myelitis since 2014, including six confirmed cases in Georgia and 228 nationwide in 2018. AFM is a rare condition that affects the nervous system and can cause paralysis. The condition became reportable in Georgia last year and was frequently in the news.
While AFM has moved off the front pages, it still challenges researchers, who haven’t yet determined an exact cause or developed a vaccine for the polio-like illness; as well as the families who struggle to find treatments.
“It doesn’t mean nothing is happening,” said Dr. Anthony S. Fauci, director of the National Institute of Allergy and Infectious Diseases.
“We’re doing a lot of surveillance, but it’s still in the puzzling stage. The public health community takes this very seriously. It’s still a very rare event. Obviously when it does occur, it’s very serious and very tragic for the child and the family.”
Last August, Carter Abernathy, 3, developed a respiratory illness. His parents realized something was terribly wrong when he had trouble pulling up his pants after going to the restroom.
Cami Abernathy, a kindergarten teacher, said doctors were perplexed by her son’s condition, and several said he had nursemaid’s elbow. She and her mother became medical sleuths, searching the internet for more information and running across AFM.
His neurologist told them that was what he suspected.
Most cases seem to occur in the late summer and midfall.
So far, there have been four confirmed cases in 2019, said NIAID’s Fauci. Those cases have been in North Carolina, Utah, West Virginia and Nebraska.
“It clearly looks like, as the years go by, that we are going to be getting more and more cases. It’s reasonable to be concerned. We can’t make definitive predictions but … we want to make sure people pay attention and it seems to get worse as the cycles go by.”
“This will never be over for us,” said Jennifer Peteet, a part-time medical assistant who had to quit her full-time job when Reid got sick in the fall of 2016. “No one has a clue what Reid’s future will be like. It’s totally devastating.”
In the initial stage at onset, he had intensive IV treatments.
He’s also had four surgeries and physical, occupational and speech therapies, which will be lifelong.
She said the family has even talked about moving from their Barrow County home, which sits on a steep rise, so it will be easier for Reid to get in and out.
There is no biological marker for AFM, which is characterized by acute onset of flaccid limb weakness and an MRI showing lesions in the area of the spinal cord called gray matter. It can be deadly.
In more than 90 percent of cases, the patients experienced a mild respiratory illness or fever before they developed AFM, which is most likely caused by a virus.
Most of its victims are children. More than half are male.
Fauci said a certain virus was identified decades ago, but in recent years, more cases began to show up.
“Did anything change about the virus?” he said. “We don’t know the answer to that.”
Amid all the uncertainty, researchers and physicians are uniting in the search for answers.
“We have seen increases in AFM cases every two years since 2014, but we cannot predict what will happen this year or in the future,” Dr. Thomas Clark, deputy director of the Centers for Disease Control and Prevention’s division of viral diseases and leader of the agency’s AFM investigation, said in response to emailed questions. The CDC is working closely with state and local health departments and other partners to increase awareness of AFM with clinicians, including symptoms and how to report a possible case.
Last November, an AFM Task Force was created to aid in the ongoing investigation. It has met monthly via teleconference and will gather for a second in-person meeting in spring 2019.
For most patients, no pathogen has been detected in their spinal fluid, which makes the search for treatments and a vaccine more difficult. Clark said other steps include monitoring and collecting more long-term data on cases and outcomes; and advancing lab technologies, such as enhancing gene sequencing to detect and identify potential causes of AFM.
Parents like Cami Abernathy are frustrated.
Carter Abernathy, wearing a sling on his left arm, recently spent a Saturday afternoon with his family at Hamilton Crossing Parks in Cartersville. He was there to watch his older brother, Copeland, play first base.
“He really had no use of his left arm,” she said. “It just hung down. He would have to swing it.”
After a series of doctor and hospital visits and a battery of tests, doctors determined it was a probable case. Abernathy said Carter had the majority of the signs and symptoms and tested positive for enterovirus D68.
And while the number of AFM cases in Georgia is low, it is an increase over several of the previous years. In 2015 and 2017 each, there was one confirmed or probable case, and in 2016, there were five.
AFM was made reportable in Georgia in the summer of 2018, but in accordance with CDC recommendations, the state has requested physicians report suspected cases since fall 2014, when the condition was recognized on a national level.
Carter has had surgery on his left side and has been doing occupational therapy since being released from the hospital last September. Abernathy, who initially thought the weakness was caused by a stroke, said Carter is about 60 percent better.
Abernathy is part of a Facebook group for parents of children with AFM. “There are families less fortunate than we are,” she said. “Some are dealing with kids in wheelchairs or on trachs (to help them breathe).”
Dr. Allan Peljovich, an Atlanta-area hand and arm surgeon, has treated several patients with AFM.
“The timing of the intervention appears to be very, very important,” he said. Carter’s arm on his left side was very weak. He said during the first couple of months, things seemed to improve, then flattened out.
When it was determined the weakness would not get better, he performed a surgery to “rewire his arm a little bit.” That involved taking a nerve branch that usually feeds the triceps muscle and transplanting it to the deltoid.
Will he ever regain full use? It’s unlikely, said Peljovich. “Will he have meaningful use of his arm? That’s very likely.”
Meanwhile, families like the Abernathys and the Peteets are praying for answers.
“Our story is already written,” said Peteet. “I’m more sad for other kids who have to go through this. There needs to be more effort into solving this mystery.”
ACUTE FLACCID MYELITIS
AFM is a rare, but serious, neurological condition.
Symptoms may include weakness or paralysis in the legs and arms, drooping eyelids or a facial droop, difficulty swallowing or slurred speech.
Health officials urge parents to seek immediate medical attention if these symptoms are observed.
SOURCES: CDC, GEORGIA DEPARTMENT OF PUBLIC HEALTH
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