RARE ILLNESS BECOMES ‘MILLION MILES OF WORK’
Two years later, child slowly recovers as polio-like condition spikes in U.S.
On the Fourth of July in 2016, Braden Scott came down with what seemed like just a summer cold.
But a couple of days later, when the 5year-old couldn’t swallow and was having trouble walking, his parents took him to urgent care in Beaumont. There, doctors decided he had strep throat or mononucleosis and sent him home with antibiotics and steroids.
But Braden continued to get worse, so his parents went to a hospital later that night. “I carried Braden to the car because he couldn’t walk,” recalled his mother, Rachel Scott.
He arrived by helicopter at Children’s Memorial Hermann in Houston, where it soon became apparent that Braden wasn’t just weak — the problem was neurological. He couldn’t breathe, sit up or swallow. Except for a few muscles in his left hand, he was paralyzed.
Since then, Braden — now 7 — has been fighting to recover from the physical devastation caused by acute flaccid myelitis, or AFM. It’s a mysterious polio-like illness that affects the central nervous system, causing weakness or paralysis. It’s a rare illness with a potentially devastating impact, and its recent resurgence has alarmed parents across the country.
The Centers for Disease Control and Prevention has seen an increase in AFM in the past four years, with more than 400 cases confirmed in the United States since August 2014.
This year, doctors have reported 17 confirmed new cases in Texas and 90 nationwide. But that number could rise before year’s end — an additional 162 cases are under investigation across the country.
AFM is found almost exclusively in young children; the CDC says 90 percent of confirmed cases are in patients under 18, and the average age of AFM patients is 4.
Just two new cases of AFM have been found in the Houston area this year, according to the Texas Department of State Health Services — one in Harris County and one in Galveston County. Both are children.
The illness’s onset is sudden: A perfectly healthy person suddenly experiences weakness in the arm or legs, difficulty swallowing, facial dropping or slurred speech.
Since AFM started spiking in 2014, researchers have struggled to find a cause. After entertaining the possibility that AFM is caused by genetic disorders or environmental factors, the CDC released a report earlier this month that suggests the illness is viral.
According to the report, 99 percent of the children with AFM had a viral illness about 10 days before paralysis set in. Like Braden, they experienced a fever, a cold, a cough, then something much worse.
Hard-won progress
At a recent therapy session, Braden’s therapist removed his neck support brace, and he tried to focus on stretching up and supporting his own head.
“Look at that!” his mom says. “You’re holding your head up like a giraffe!”
Improvements are small and hard-won. Since he first fell ill in 2016, Braden has spent months at Memorial Hermann and at an in-patient rehab hospital in Dallas. He lives at home now — the Scotts have since moved to The Woodlands — but he goes to semiweekly occupational, physical and speech therapy at TIRR Memorial Hermann The Woodlands, and he does rehab work every day at home.
A cervical brace on his neck helps Braden support and control his head. A tracheostomy tube needs suctioning now and then to keep his airway clear of congestion. He’s slowly starting to build back some of his strength and abilities.
Life changed for the whole Scott family — Braden, his parents and his four siblings — almost overnight, Rachel Scott said. One day, Braden was a healthy 5-year-old; a few days later, he couldn’t stand up.
“We try to live our lives the same as before,” she said. “We want to give him as normal a childhood as we can.”
But honestly, everything is different, she said. Braden has a nurse with him 24 hours a day, and the Scotts’ lives revolve around medical and therapy appointments.
“We had to learn to live with an entirely different family dynamic,” she said. Even going to dinner at a restaurant requires a complicated ballet of planning and timing.
Building awareness
Braden’s parents are working to spread the word about AFM, to help other families recognize, deal with and maybe prevent the condition.
Rachel Scott is one of about 20 parents who traveled to Washington, D.C., on Nov. 13 to meet with CDC representatives. All have children with AFM, and all are pushing the agency to do more.
“We really felt strongly that the CDC is not paying enough attention, making big enough steps in researching and preventing AFM,” she said.
Even the agency’s own medical advisers have criticized the CDC for being slow to get to the bottom of AFM.
Dr. Keith Van Haren, a professor of neurology at Stanford University, told CNN last month he was “frustrated” with how slow the agency has been in gathering data and educating doctors about how to diagnose and treat AFM.
The meeting she attended was “a good first step,” Rachel Scott said, but she’d like to see more research and more resources devoted to the illness that has altered her son’s life.
In therapy, Braden is working to get stronger so that he can start to dress himself again and do other small daily tasks, said Jamie Beckham, his occupational therapist at TIRR Memorial Hermann.
“He’s making progress,” she said. “He’s not there yet, but I do think he’s going to continue to make progress.”
Small steps add up
At a recent session, she had Braden tossing bean bags into a big plastic cylinder.
One at a time, he took each turtle-shaped bag into his right hand and slowly, painstakingly passed it to his left. He tossed, then tried to reach down for another — but his arm doesn’t do what he wants it to.
“OK, ready? Try to bring it all the way down,” Beckham said.
Braden worked to straighten his right arm, his 7-year-old face twisting up in concentration.
“You can do it. Don’t give up!” Beckham told him. “You’ve done it once. You can do it.”
Braden’s parents are “such good advocates” for AFM awareness, Beckham said, trying to spread the word about the condition so other parents can recognize AFM right away and intervene early. “They don’t want other parents to see their kids go through that.”
And awareness is building, Beckham said. She’s heard from parents who think they see symptoms in their own children and want to rule out AFM.
“Even our own therapists here, when their kids get a cold, or they get a cold, it’s in the back of their minds now,” she said.
And Rachel Scott knows her son is slowly improving.
“Day to day, I don’t think we see many changes,” Rachel Scott said. “I feel like we do a million miles of work with him and the payoff is very small — but small steps forward add up over time, so we continue to push him.”