Until a few weeks ago, Cami Abernathy had never heard of acute flaccid myelitis.
In September, though, her 3-year-old son, Carter, was diagnosed with a likely case of the rare, but serious, neurological condition that can cause polio-like illnesses, mostly in young children and teens.
His case and others like it across the nation have health officials concerned.
The Centers for Disease Control and Prevention recently reported that so far this year, it has confirmed 62 patients with AFM out of 127 suspected cases in 22 states.
In 2017, according to the CDC, there were 33 confirmed cases in 16 states.
Of the confirmed cases, the average age is 4. More than 90 percent are in children age 18 and younger, according to the CDC.
“We all knew something was wrong, but doctors and nurses kept telling us he was fine or would be fine,” said Abernathy, a teacher, who lives with her husband and two young children in Rydal, nears Cartersville.
Carter’s problem started earlier, about a week after he battled a respiratory illness. In August, he went to the restroom and when finished, had trouble pulling up his pants.
“He said, ‘My hand won’t work’ and that his left arm ‘was sick,’” said Abernathy.
Could he have hurt his left arm and hand, although he never complained of pain? Or, his parents feared, could it be a stroke?
After a series of doctor and hospital visits and test after test, doctors eventually said it was most likely a case of AFM, she said.
“Hearing words from doctors like ‘bizarre,’ ‘strange,’ ‘odd’ and ‘weird’ only creates panic and it did in us,” Abernathy said.
She said it was like stumbling around in the dark, and she found it troubling that some doctors appeared to be as well.
“They didn’t know much more than we did,” she said. “We were concerned because we didn’t know if it would progress or how it would affect him later. We were worried about his future and whether it would affect our other son.”
He’s now undergoing physical therapy, and Abernathy said the family has seen much improvement.
Dr. Sumit Verma, medical director of the Neuromuscular Program at Children’s Healthcare of Atlanta, said CHOA has seen nearly a dozen cases in the past few years.
“Unfortunately, there is no cure for acute flaccid myelitis,” he said in a statement. “However, symptomatic management is available and rehabilitation could improve function and quality of life.”
He said the illness can strike a healthy child “without notice,” but cautions it is still extremely rare.
He suggests that if parents notice a child has weakness in their limbs, it’s important to seek medical care immediately.
He and others say the best efforts to prevent the illness are for parents to make sure they and their children do basic things to help keep them healthy.
Those steps include wash their hands, cover their coughs, stay home when sick, and make sure they are current on vaccines.
According to health officials, symptoms may include sudden muscle weakness in the arms or legs, often following a respiratory illness. Other symptoms include weakness or stiffness in the neck; drooping eyelids or a facial droop, difficulty swallowing and slurred speech.
In Georgia so far this year, there have been an estimated three confirmed, or probable, cases of AFM with two possible other cases under investigation, according to the Georgia Department of Public Health.
And while the number 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 this past summer, but in accordance with the CDC’s recommendations, the state has requested physicians report suspected cases since fall 2014, when the condition was recognized on a national level.
What is particularly worrisome to parents is that health officials still have not identified a single cause of the illness. Possible factors can include viral infections such as enterovirus and West Nile virus, environmental toxins and a condition where the body’s immune system attacks and destroys body tissue that it mistakes for foreign material.
Currently, the poliovirus is not the cause of the AFM cases, according to the CDC. Based on previous years, most cases appear in the late summer and fall.
The condition can lead to long-lasting and even permanent disabilities. AFM specifically affects the area of the spinal cord called gray matter and causes muscles and reflexes to become weak, said Dr. Nancy Messonnier, director of the CDC’s National Center for Immunization and Respiratory Diseases, during a briefing earlier this week.
“The reason why we don’t know about AFM — and I am frustrated that despite all of our efforts, we haven’t been able to identify the cause of this mystery illness — we continue to investigate to better understand the clinical picture of AFM cases,” said Messonnier. “Despite extensive laboratory testing, we have not determined what pathogen or immune response caused the arm or leg weakness and paralysis in most patients. We don’t know who may be at higher risk for developing AFM or the reasons why they may be at higher risk.”
Jennifer Peteet’s son, Reid, who is now 3, became sick in the fall of 2016.
Peteet, of Winder, said Reid developed a cold and a few days later couldn’t stand up. He kept falling, she said, because he was so weak. They rushed him to the emergency department at Children’s Healthcare of Atlanta, but doctors couldn’t pinpoint the cause. By that time, Peteet said her son couldn’t move from the neck down.
He was diagnosed with pneumonia. “I wonder today if she (the ER doctor at the time) even heard my complaints that he couldn’t move,” she said. “I was led to believe that he was so sick with pneumonia, that was causing him to be that much weaker.” His breathing worsened.
“We knew something wasn’t right,” said Peteet, who is a member of a Facebook group of hundreds of parents around the globe whose children have been affected by AFM. “Every child is being misdiagnosed.” Reid, she said, was tested for several viruses, but the tests came back negative.
A few years before, her mother had mentioned hearing about a condition that was paralyzing children, “but it went in one ear and out the other,” Peteet said. “That was until it hit me right in the face. I just wish parents had more information. The very challenging part is that children like Reid are too young to communicate what’s going on, and if doctors were more aware that it’s out there, who knows what could have been different.”
Doctors eventually diagnosed AFM after an MRI. Today, Reid, who spent months in inpatient rehab and continues rehab on an outpatient basis, can scoot on the floor but must use a wheelchair to get around. He can put a limited amount of weight on his legs.
“He’s really come a long way, but everyone doubts that he will make a full recovery,” Peteet said.
She wants parents and doctors to be more aware of signs, symptoms and treatments.
“My hope for medical professionals is that with early awareness, intervention and advocacy, our affected children will still live long lives, not solely defined by AFM,” Peteet said. “My message to newly affected families is that although the road will be long, there is hope through therapy and surgery, although there’s no cure yet.”
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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