The extent of recovery depends on how AFM affects children’s bodies, said Greenberg. Those with inflammation caused by an immune response tend to do better, because steroids can calm the inflammation. Those with spinal cord damage caused directly by the virus warrant different treatments and don’t respond as well.
For both groups of patients, he has found that aggressive physical therapy starting soon after hospitalization, including electrically stimulating muscles to force them to contract, leads to the best recoveries. “We try to keep muscles and joints as healthy as possible so that when the nervous system is repairing itself, it will have adequate muscle to connect to,” Greenberg said.
A frustration has been trying to get insurance companies to cover the prolonged physical therapy required.
“We’re seeing enough kids get better that we can look parents in the eye and say, ‘This is a horrific event, and we empathize with you, but the good news is, with work, we can show you kids who are walking and back in school,’” Greenberg said. “There’s a road back, but we have not found an easy road yet.”
To improve research into AFM, Greenberg has called for mandatory reporting of the condition and centralized testing for infectious agents so researchers can better understand the full scope of the outbreak.
“Without that, there’s always going to be an element of uncertainty around the data,” he said.