First recognized in 2014, AFM remains mysterious.
The CDC says it seems to be following an every other year pattern that emerges in the fall.
No one knows how the disease is spreading, Gupta said.
AFM is a rare condition that affects the nervous system, causing muscle weakness.
The 10 top local news stories from metro Boston and around New England delivered daily.
Parents and clinicians should remember that this is a rare condition, affecting less than one in a million people, she said.
In total, CNN found 47 confirmed cases and 49 more that were suspected or being investigated, for a total of 96.
At least 62 cases have been confirmed in 22 states this year, and at least 65 additional illnesses in those states are being investigated, according to the Centers for Disease Control and Prevention (CDC). The disease is being called acute flaccid myelitis, or AFM, and although researchers suspect that it's caused by a virus, no virus has yet been discovered that's associated with the condition.
Doctors say that most of the reported cases of AFM involve those under the age of 18. Several cases have been linked to enteroviruses or other germs, but officials have not been able to find a cause for the majority of the cases.
"We thought that because they simultaneously spiked that there was a causal relationship, but when we searched to see if we could identify enterovirus D68 in these individuals, we didn't have any uniform results".
So far, the CDC has found no relationship between vaccines and children diagnosed with AFM from the 2014 cases. It's acting very much like a post-viral neurological syndrome, but we can't say for sure that it is because we don't have any definitive isolation. One child with the disorder died in 2017.
There is no treatment specifically for AFM, but affected children can undergo physical and occupational therapy to maximize their strength and adapt to their limitations.
Still, because this is a "pretty dramatic disease", Messonnier said, health officials want to raise awareness about the symptoms to ensure parents seek medical care immediately if their children show a sudden onset of weakness in their arms and legs.
Boston Children's Hospital has evaluated all of the confirmed and suspected AFM cases that occurred in MA this year. "These symptoms that are similar to cold-like symptoms, with this particular virus, what is probably happening is something is causing an inflammation within the spinal cord". Some merely have difficulty moving the eye or the face; some have a single weakening limb. This can require urgent ventilator support (breathing machine).
Because the disease attacks the spinal cord, Fauci said that a spinal tap - when a needle extracts cerebrospinal fluid from the spinal canal - is how researchers are looking for potential causes of AFM.
More broadly, she noted, "there is a lot we don't know about AFM".
This disease is like a "hit-and-run", Gupta said, and "you don't have evidence of the virus but you do have evidence of the aftermath so it's hard to piece together". He continues to get therapy to strengthen his muscles and uses electric stimulation pads to help rejuvenate his damaged nerves.