AUSTIN, Texas (KXAN) — Doctors nationwide are puzzled by a mystery illness paralyzing children as young as 4 years old.
In July, Jennifer Tavarez says her 5-year-old, Jahsua, had a cold and a fever. Then, when he got up in the middle of the night to use the restroom, he fell to the floor, unable to move his leg.
“He was unable to wiggle his toes or lift his leg up,” Jennifer says. That’s when Jennifer knew it was more than a cold, and at the advice of her pediatrician rushed Jahsua to Dell Children’s Medical Center.
Within hours, she says her son was paralyzed from the neck down.
“Listening to that was the worst thing I’ve ever heard. I cried, of course,” Jennifer says.
When the mom of two boys asked doctors how and why, they had no answers.
“We really don’t know what is causing it in some kids now, and there definitely needs to be more research,” says emergency room Dr. Eric Higginbotham at Dell Children’s Medical Center.
What Jahsua experienced is called Acute Flaccid Myelitis, or AFM for short. It attacks the nervous system, targeting the spinal cord, leading to weakness in the arms and legs, eye problems including droopy eyelids, difficulty swallowing and slurred speech.
The Centers for Disease Control says it’s rare but not contagious, with less than one in a million people getting it each year but the number of suspected cases in Central Texas seems to be on the rise. The CDC first saw an outbreak in 2014 and found it spikes every two years. So far this year, there have been 72 confirmed cases in 24 states. Fourteen have been reported in Texas, including two in Travis County and one in Hays County.
However, health care providers are not required to report possible cases of AFM to the Texas Department of Health and Human Services or the CDC, and KXAN found more than one child in Central Texas hit hard by the life-changing condition. Jahsua was just one of them.
There is a growing frustration with the CDC in how the agency keeps up with cases of the illness. Even the CDC’s own medical advisers agree the center isn’t doing enough.
“Our message isn’t getting everywhere it needs to and we need to work harder at this,” said Dr. Nancy Messonnier, the director for the National Center for Immunization and Respiratory Diseases at the CDC.
The CDC is encouraging doctors at the local level to look for and notify their health department about possible cases.
Dr. Higginbotham says the hospital has seen upward of six cases of AFM this year, and there are many unknowns when it comes to treatment.
“Some of these kids recover from it,” he says. “Some kids, once they have that nerve damage, there is really not a way to heal that. So, they stay in this weakened condition.”
One story of hope is 5-year-old Evelette Zavala.
The Central Texas kindergartner was rushed to the hospital early October when her mom, Virginia, noticed the left side of Evelette’s face was drooping and her body was weak.
“The next day, she started complaining about her neck hurting,” she says. “She couldn’t move and she couldn’t sit up by herself.”
After two weeks of intense treatment and therapy, Evelette went home, with only some weakness in her arm. It surprised doctors and her mother.
“She’s a lot better,” Virginia says. “We are happy they are working with her and therapy, like I said, the therapy is key.”
Dr. Higginbottham says Evelette is lucky to make a nearly full recovery because not every child walks away from AFM.
Jahsua spent a month-and-a-half at Dell Children’s. Jennifer says during that time, intense physical therapy three times a day led to Jahsua regaining the use of his upper body, but not his legs. He now must use a wheelchair.
Jennifer said Jahsua’s progress isn’t the same since leaving the hospital and regular, more frequent physical therapy sessions. She said – because AFM is so rare – her insurance recently denied coverage for possible treatment at the International Center for Spinal Cord Injury at Kennedy Krieger Institute in Baltimore, which provides electrical stimulation and robotic devices to help children with the disease to use their arms and legs.
The CDC says it is concerned and has not confirmed the cause for the majority of AFM cases, but on its website says it’s looking into whether certain viruses, including poliovirus, non-polio enteroviruses, adenoviruses and West Nile virus trigger the condition in children.
On Monday, panelists on the Today Show discussed how some researchers believe they may have discovered a virus that could be the cause: Enterovirus D68.
It’s a polio-like virus that’s been around for a while and has its own CDC page.
EV-D68 really started ramping up, however, in 2014 — around the same time doctors started seeing an increase in AFM. Research is still being done, but the next steps for scientists will be trying to develop a vaccine or cure.
For parents like Jennifer, it’s more about what’s next now that Jahsua has limited use of his body and options to treat the mysterious illness.
“It breaks my heart — it breaks my heart,” Jennifer says through tears. “Kids are meant to walk, they are meant to run, to fall, to get bruises on their legs.”
A fundraising page has been set up to help Jahsua and his family.