What Is Acute Flaccid Myelitis (AFM) and How Is It Like Polio?
I was Following a Young Man's Progress
A young man I follow on Twitter has a disease very similar to AFM, and he has been very open about his experience. He is such a champion. He came down with symptoms in late June and I do not think he has a diagnosis still! I have followed him and his experience, keeping him in my prayers. When I heard about increased occurrences of Acute Flaccid Myelitis, I wondered if that was what could be affecting him. After doing the research, I am not sure, as he is not a child and there are some things that are different, but still it got me thinking about all these little kids and how frightened their families must be.
Maybe it's my social work training, but I felt the need to collect as much information about AFM as I could and compile it into a simple to read article. I hope it is helpful for someone.
Finding out What's Wrong with Your Child
Watching for Symptoms
Often the rare disease known as Acute Flaccid Myelitis starts as the common cold. Or it could be as simple as a runny nose. A few days later, when your child is feeling better, the more nasty symptoms show up. She can't move one or both of her arms or legs, or maybe her face is droopy. She seems dizzy or is having a hard time moving her eyes. Any one of these can be a symptom that your child may have AFM. Doctors will have to confirm with an MRI and testing the spinal fluid, as well as a physical exam.
Some other illnesses are occasionally confused with AFM, resulting in misdiagnoses:
- Spinal Stroke
- Guillain Barre Syndrome
- Acute Disseminated Encephalomyelitis (ADEM)
- Transverse Myelitis
Currently there is no known cause of AFM, although it has been linked to enterovirus D-68 as well as a handful of other viruses, nor is there a cure.
The outlook is varied, with some patients able to fully recover. Often there is some lingering paralysis, and very rarely, death.
There are some treatments which have been proven to help with some patients:
- Immunoglobulin Replacement
- Plasma Exchange/ Plasmapheresis
- High doses of Corticosteroids
- Antiviral drugs
- Prozac as anti-inflammatory
- Physical Therapy
Acute Flaccid Myelitis literally means "sudden and total paralysis with injury to the spinal cord involved in muscle movement, called the gray matter" according to Dr. Keith Van Haren . The working theory is that "scientists think a virus travels to the spinal cord and damages motor function there, irreversibly."
How to Spot Symptoms of AFM in Your Child
Until we figure out if this is an infection or if this is an autoimmmune process, until we figure out how to prevent it, then the effort to bring awareness to it and develop timely interventions is appropriate even if it is 1 in a million— Dr. Cristina Sadowsky, Clinical Director, International Center for Spinal Cord Injury Kennedy Inst
More Children Diagnosed With Rare Polio-Like Illness | TODAY
A typical case of AFM is preceded by a median of five days with rhinorrhea, cough or pharyngitis. GI symptoms are also reported in 2/3 of the cases.— Dr, H. Cody Meissner, M.D.
Why Little Kids?
Little Immune Systems
Kids, especially smaller children, are more susceptible to disease in general because they have not been exposed to as much. The more viruses we are exposed to, the stronger our immune systems become. The virus (or viruses) that cause AFM are apparently something older adults can fight off more easily.
Even though it is a scary situation, remember that the disease is still very rare.
Only one person in a million are getting this disease. This is one way AFM is very different from Polio. At its peak, there were nearly 60,000 children afflicted with Polio, compared to under 100 children who now have AFM.
But we must remain vigilant!
AFM has killed more children in the U.S. than Zika, Ebola & West Nile combined.
An Ounce of Prevention
Precautions against AFM recommended by the Center for Disease Control
I worked in a hospital during the height of the AIDS epidemic. During that time, hospitals everywhere began using "universal precautions". The most important part of that was to wash your hands frequently and thoroughly. This is always good advice.
More suggestions from the CDC and other medical experts:
- Wash Hands frequently
- Keep vaccinations up to date
- Use mosquito repellent when outdoors
- Stay home if you are sick
- Cover your cough
- clean surfaces with disinfectant, especially if touched by a sick person
- reduce or eliminate red meat from diet to reduce inflammation in body
I have seen many comments that people believe vaccinations are causing the disease. This is not true and has been refuted by the CDC as well as many experts. The same is true for the theory that it is coming from illegal immigrants.
Common Questions and Answers
Does the disease happen at certain times?
Most new cases begin in August & September, but it can strike anytime
Does it only affect children?
90% of the cases are in children. Adults who have suppressed immune systems may be more at risk.
Does it happen in a certain place?
There have been no geographic clusters in the outbreak so far.
How long does it take to start showing symptoms?
Usually within a few days of a common cold or stomach bug, then the symptoms are sudden (paralysis, dizziness, droopy face, etc)
What should I do if I notice symptoms
Get to emergency room right away. The faster the disease is diagnosed, the better your child's chances of recovery, and diagnosis takes a bit of time.
What is needed to find the cause of AFM?
A pathogen detected in a patient's spinal fluid would be good evidence.
Story of a Boy & His Mysterious Illness (Acute Flaccid Myelitis)
What do experts think might be the cause?
Virus, specifically enterovirus D-68 is the most common theory. Other theories suggest environmental toxins or genetic history may be the culprit.
More Resources on Acute Flaccid Myelitis , or AFM
- Acute Flaccid Mylitis (AFM Fact Sheet - download
from the National Center for Immunization and Respiratory Diseases/ Division of Viral Diseases
- What's causing polio-like illness that's paralyzing children
We don’t know.
- AFM, a mysterious polio-like illness, 'very frustrating' to diagnose - Orlando Sen
AFM’s hallmark symptoms is the rapid onset of weakness in arms or legs. Most patients have a respiratory illness like a cold before the neurological symptoms set in. The condition mostly affects children. There are currently no treatments for it and
- Parents of children with AFM being treated in Baltimore warn about rare, scary polio-like condition
Public health officials are ringing the alarm about AFM, a polio-like condition that afflicts 1 in a million, but can cause paralysis and even death. Doctors know little about it.
- Acute Flaccid Myelitis in Children
Acute flaccid myelitis (AFM) is a rare but serious condition affecting the nervous system and causing the muscles and reflexes in the body to become weak.
- Acute Flaccid Myelitis | AFM Surveillance | CDC
Investigation of acute flaccid myelitis (AFM) in U.S. children, 2014-2016.
- AFM, the polio-like illness affecting kids: what we know - Vox
127 people are believed to be sick with the illness, and their average age is 4.
- Her toddler suddenly paralyzed, mother tries to solve a vexing medical mystery - Los Angeles Times
Lucian Olivera was one of the first California kids to become paralyzed by a mysterious disease now known as acute flaccid myelitis. It's believed to be caused by enterovirus D-68, a cousin of polio.
- Rare, polio-like disorder AFM on the rise, CDC and health dept. warn
Six children have been diagnosed with a rare but potentially severe condition that causes weakness or even paralysis in the arms and legs.
- Most states facing confirmed or possible cases of polio-like illness - CNN
- Polio like Illness appears to be on the rise Across U.S.
More states have reported cases of a paralyzing, polio-like condition called acute flaccid myelitis. NBC News counts 87 possible or confirmed cases in 26 states
- A Mysterious Polio-Like Illness Is on the Rise in Kids. Scientists Don't Know Why.
Dozens of children across the United States have developed a rare polio-like illness, but the reason for this spike in cases remains a mystery, according to health officials.
- CDC confirms 62 cases of polio-like illness across US | TheHill
The Centers for Disease Control and Prevention is investigating 127 suspected cases of a polio-like condition that mostly affects children.The CDC said that 62 of those cases have been confirmed in 22 states in 2018.
Graph: AFM Cases Reported
Management of Acute Flaccid Myelitis
Where to Find Support
The community of families fighting AFM, while small, is well connected. There is at least one active group on Facebook as of this writing, easily found with a search. Ask your pediatrician and specialist your child sees for local support groups. There may not be a group (yet) for AFM specifically, but they will be able to guide you to groups with families facing similar circumstances. Keep your family and friends in the loop too. They may have trouble coming up to you, but if you reach out to them, they can be a great resource. People want to help. Check with your child's school for possible support for siblings of your sick child - they will need help too. Your church can also help, even if you have not been active, they will be glad to help with food or rides, or any support you might need. Families facing a medical crises, especially with children, are what church families excel at. Let them help! The worst thing you can do is try to go through something like this alone.