ORLANDO, Fla. – In the past several months, there has been increasing curiosity about the mystery illness acute flaccid myelitis, commonly known as AFM. It’s a polio-like disease that, according to the Centers for Disease Control and Prevention, causes weakness or loss of use of a limb.
Specifically, AFM affects an area of the spinal cord called gray matter. When gray matter is affected, a patient can, among other things, experience muscle weakness, partial or total paralysis, difficulty swallowing and even respiratory failure. And although AFM mainly affects toddlers, people of all ages have been reported with the disease.
AFM is nothing new. The CDC has been tracking the illness since 2014. But after a spike in reported cases that summer and again two years later, attention directed towards AFM had been relatively sparse -- until now.
On Oct. 9, the CDC’s surveillance webpage for AFM noted that, for the first 10 months of 2018, federal health officials had been made aware of 38 confirmed cases of AFM in 16 states. Fast forward just a week to Oct. 16, and the CDC reported that there had been 62 confirmed cases for 2018 spreading across 22 states with 127 other cases under investigation, which brings us to today.
New numbers on the surveillance webpage for Oct. 23 said those 127 unconfirmed reports were now up to 155. Health officials have said that the newest numbers have them concerned.
AFM is somewhat of a mystery. Doctors aren’t sure what exactly triggers it and researchers haven’t found a preventative or a cure.
As part of Kirstin O’Connor’s story this week on AFM, News 6 sat down with Dr. Ronald Davis, owner of the Pediatric Neurology and Epilepsy Center of Central Florida and assistant medical director of epilepsy surgery at Arnold Palmer Hospital. Below is a partial, edited transcript of our interview with Dr. Davis.
For a lot of our viewers, AFM is something they’ve never heard of. Can you sum up what it is?
Dr. Davis: This is a disorder that seems to be polio-like and affects the spinal cord and the nerve connection for extremities in a way that causes pretty profound paralysis.
What do we know about AFM? It’s not new but to a lot of people watching this report, to them it's going to be new.
Dr. Davis: Thankfully, there's not a lot of cases; it's not new. It's been reported worldwide and we're coming to grips with it in the last several years. We believe it’s a direct effect from an infection related to a viral illness, in particular either enteroviruses or an auto-immune response related to that infection: body against body.
AFM has been described a s a polio-like virus. And because of that, some parents are calling for a new vaccine. Do we need to modify the polio vaccine? Do we need to add a new one, or we're not really sure?
We're not sure. I think we have to first figure out exactly what the causative agent is. Vaccines theoretically could be very helpful, just like it's been for polio. If we could isolate whatever the virus is, or the autoimmune response caused by the virus, and then develop a vaccine, that would be wonderful. That might be where we need to go in terms of our next big intervention to try to eliminate or eradicate this disorder.
How do you treat AFM?
Dr. Davis: That's been very difficult and very unsatisfying, both as the caregiver as well as the parent. Things have been tried like IVIg, which is gamma globulin plasma freezes where we remove the blood, tried to clean out the immune factors, place it back in, and steroids. So far, there hasn't been a very good opportunity to see it completely reverse the effect of AFM. We're still looking for a great treatment modality.
One of the mothers (we interviewed) described AFM as a strain of the polio virus, she thinks they need to make a new vaccine for the strain. Is that something that's possible or you don't know what you're dealing with yet? Is it too early?
Dr. Davis: It is a little early. The thought process is that it's related to a particular enterovirus and polio is part of those enteroviruses' class but we're not quite sure yet which strain. You wouldn't be able to just shoot a virus at this point and hope for great efficacy.
Up to what age have people reported to have AFM?
Dr. Davis: You know, in other countries it's actually also reported into adulthood.
Who is most at risk for AFM? If there was a target age group for parents to be very aware, what would it be?
Dr. Davis: It appears to be somewhere between 2 to 6.
What are the odds that a child will get AFM? It's not common, right?
Dr. Davis: No, it's very, very rare still, less than one in a million, I believe.
Some people say this is just one of the side effects of the whole non-vaccination movement for kids who don’t want to vaccinate. True or false?
Dr. Davis: I think that's false. It's still very important to vaccinate your children for other reasons obviously. Remember, vaccines were developed to keep people from getting these severe illnesses that cause death. But in this particular disorder, AFM, children both vaccinated and unvaccinated have shown to have this happen to them.
Are there any genetic links?
Dr. Davis: There's no genetic links now. There's a thought process that there is, in those who might have an autoimmune response, from a genetic aspect that they may be more prone to that occurrence, but but not a clear-cut genetic link.
This is a scary thing to parents. What should they look out for in their kids' behavior or what's going on with their kids to see if it's possible that the kid might have AFM?
Dr. Davis: Sometimes there may not be a lot of warning signs. The typical presentation might be just a cold, and then you think you're recovered. In the case of a patient that we had not long ago, they woke up and they were paralyzed. There wasn't a lot of warning and that's the real scary part. We still need to vaccinate our children properly, take care of all our usual health needs and be cognizant of even simple things like hand-washing, to try to prevent colds and flus in the first place.
Is it contagious?
Dr. Davis: Not as far as we can tell exactly. Again, you get an illness like a cold. That part might be contagious and that's where proper hand-washing is important. But then it seems to be after you've recovered from that acute phase of a cold or flu is when the symptoms start to come out. So again, the thought process is that it is an autoimmune-type reaction related to that initial illness. There's still a lot for us to discover.
How frustrating is this for you?
Dr. Davis: Very. Because you don't like to see that you can't fix this little girl or little boy’s paralysis of their leg. One day, they were normal and, the next day, they couldn’t walk. We don’t want anything like that to happen in the first place, but when you can’t fix it, it just makes it that much harder. Awareness and knowledge is very important as we try to develop not only recognition but treatments and vaccination.