A study published last yearfound six of eight children in Colorado with acute flaccid myelitis still struggled with motor skills one year after their diagnosis.
Many are calling it a mystery illness, it is a polio-like ailment that has been seen in children in 22 states this year and Wednesday, Douglas County confirmed that it is investigating a possible case of acute flaccid myelitis in Nebraska. The CDC said the average age of patients nationwide is four years old.
AFM affects a person's nervous system, according to the CDC website, mainly in the spinal cord, and can present polio-like symptoms, including weakness and pain in the arms and legs. Additional symptoms include facial drooping or weakness, difficulty moving the eyes, difficulty swallowing and slurred speech.
The Centers for Disease Control and Prevention announced Tuesday that 62 cases have been confirmed in 22 states in recent weeks.
Robin Roberts of Richmond, Virginia, spoke with NBC News about the death of her 5-year-old son, Carter, last month after he became paralyzed from his nose down because of the illness in 2016.
Health officials said AFM can start with cold-like symptoms, but that's no reason to rush over to the ER. The CDC has yet to figure out a common link between all the cases that have been reported, although they did note that several of them seem to have been linked to infections by other viruses, enterovirus D68. AFM may be one of them.
Jackson, who also saw persistent muscle weakness in her patients, said she believes the CDC may be hesitant to specify the long-term effects of disease because existing studies have included only small numbers of patients.
"Treatment options are quite limited", he said.
The cases in 2014 and 2016 were partly attributed to particular strains of respiratory germs called enteroviruses, which spread the most in the summer and fall.
Once diagnosed, some patients have recovered quickly, but some continue to have paralysis and require ongoing care, Messonnier said.
"As a parent myself I understand what it's like to be scared for your child", Messonnier said. We have not confirmed the cause for the majority of these cases.
Acute flacid myelitis or AFM is not new, but cases have been on the rise since 2014. The CDC estimatesfewer than 1 in a million Americans will get the disease.
A rare but scary complication from a virus has left more than 60 children with a polio-like paralysis. He says he has had very good outcomes in 14 of the 15 patients; the one girl who did not regain full function had "a suboptimal result, but [her parents are] happy she got something back". Also, since it's viral, doctors recommend using bug repellent when you're outside.
"Nobody really knows treatment protocols, they don't know prognosis, and they can't really give parents an answer as to where this is coming from", she said.