[Update March 1, 2018: A team of doctors and scientists from the U.S. and Europe led by Kevin Messacar, MD, an infectious disease specialist from Children's Colorado, has found that Enterovirus D68 (EV-D68) is a likely cause of acute flaccid myelitis (AFM), a rare illness that affects the nervous system of children. Read the article here.]
In late July of this year, life for the Roberts family drastically changed when they found their 3-year-old son Carter face down, unable to move and crying for help.
After a trip to the ER and 72 hours later, Carter had lost the ability to move anything from the nose down. Doctors diagnosed Carter with acute flaccid myelitis, or AFM — a rare, but serious neurological condition that causes paralysis in children. AFM is characterized by flu-like symptoms or a respiratory illness followed by sudden muscle weakness. According to the CDC, AFM can result from a variety of causes including viral infections but the main cause is still not fully known.
Learning more about acute flaccid myelitis
AFM first made an appearance in 2014 when 120 people were diagnosed in 34 states. In 2015 we saw this number drop with only 21 people diagnosed in 16 states. But those numbers are on the rise again. Through August of this year, there have already been 50 cases in 24 states.
Children’s Hospital Colorado physicians, including hospital medicine and infectious diseases specialists, Dr. Kevin Messacar and Dr. Samuel Dominguez and pediatric neurologist, Dr. Teri Schreiner, are the world's experts on AFM.
"What we saw ... is that the majority of children had a fever and a respiratory illness," said Dr. Messacar. "Five days later, they would develop pain in the arms and legs, and weakness followed."
Of the 12 patients they saw in 2014, Dr. Messacar reports that most of them are doing better than when they first came into the emergency room, but the majority continue to have some level of disability.
One of those patients is Dominick Howard, who was diagnosed with AFM at Children’s Colorado in 2014. Dominick spent months in the hospital after he was diagnosed. 9News caught up with Dominick this year and reported that he is slowly, but surely, making progress to regain the movement that AFM took from him.
How to move forward
Unfortunately, not all patients are as lucky as Dominick. "It's important to understand that there's a wide spectrum of severity of this disease," said Messacar. "On one end, you see mild weakness in one extremity," he said. "On the other, you've got children who have lost the ability to breathe on their own, and exhibit complete paralysis in their arms and legs.”
What’s more, at this time there is no cure for AFM. That's why Drs. Messacar, Dominquez and Schreiner are working tirelessly to find one.
Current treatment focuses on alleviating symptoms — which is exactly what Carter’s family is working on with him. His mom Robin says, “Carter is very much still Carter. That is really the silver-lining that Carter is very much still there.”
Watch the full stories from CNN and NBC Nightly News.