What to Know About The New-age Polio: Acute Flaccid Myelitis or AFM
Acute flaccid myelitis (AFM) is a very rare but serious neurological condition. It's often compared with polio, and in 2018, 193 cases were reported in the United States.
LaMay Axton remembers every detail of Sept. 23, 2016, her own birthday, when life changed forever for her granddaughter, Cambria "Cami" Tate, 2 1/2 years old. LaMay, who is Cami's caregiver, says the child originally started with just another cold. Before things took a terrifying turn, Cami's fever was 103 degrees and "her body seemed to be super-rigid and she couldn't cough up secretions."
After a rush to the doctor, a bronchitis diagnosis, and trip back home: "I think God told me to sit down and watch Cami that day," LaMay told HealthCentral in a telephone interview. She obeyed without hesitation. "Later, her little legs gave out from under her, and she looked like a marionette doll."
LaMay rushed Cami to a San Diego military hospital where the child went into respiratory failure and was without oxygen for 33 minutes as LaMay prayed: "God, please don't take her." Doctors "brought her back" but she became paralyzed from the neck down and was in a medically-induced coma for three months.
Now at age 4½, Cami can't walk without assistance because of her flaccid right leg, trunk — her pectoral muscles won't return to normal — and right arm. She goes to physical and occupational therapy for help with movement and for her scoliosis, for which she'll have surgery in a year or two. She also has gastrointestinal reflux disease due to gastroparesis or delayed gastric emptying.
The inquisitive and precocious Cami was ultimately diagnosed with acute flaccid myelitis (AFM) — a very rare but serious neurological condition that affects gray matter in the spinal cord, weakening muscles and reflexes. It's often compared with polio, and last year, 193 cases were reported in the United States. Experts estimate AFM will affect less than one in a million children here every year, with the average age being 4 years old.
How to understand AFM
To learn more about AFM, HealthCentral spoke by telephone to Benjamin Greenberg, M.D., M.H.S., a member of the task force on AFM at the U.S. Centers for Disease Control and Prevention (CDC). Dr. Greenberg is vice chair of translational research and the Cain Denius Scholar in mobility disorders in the department of neurology and neurotherapeutics and the department of pediatrics at The University of Texas Southwestern Medical Center.
He explains that viruses probably cause AFM and that since 2014, more cases have been seen every two years, usually arising between July or August and November, when enteroviruses circulate. These viruses cause various infectious illnesses that can present with coughing, sneezing, and fever, but if they infect the central nervous system, serious illness can result, as is suspected in the case of AFM.
"It's important to understand that AFM is a form of transverse myelitis, or inflammation of the spinal cord," says Dr. Greenberg. "We suspect the virus for AFM has been around a long time, knowing also that viruses mutate, and this one did."
All viruses have seasonality to them, he says. "Viruses that are able to survive outside the human body are easier to spread, and their seasonality is dictated by their chemical properties.
Think about flu — we don't have the same influenza virus every year, and different enteroviruses circulate during different years. This one, enterovirus D68 (EV-D68), is more prevalent every other year."
Experts agree that there's no consensus on why one child is at higher risk for AFM while another is not, and they have no data to predict long-term consequences. They do agree that if a parent sees any sudden weakness of limbs, medical care should be sought immediately.
Help for AFM on the horizon
Dr. Greenberg knows we haven't seen the last of AFM and is working on a grant to build infrastructure to manage data from the impending 2020 outbreak.
"We want to be able to track these cases in real time," he says. "We need staffing, with coordinators to make contact with all the families as cases are being reported. Then we will get them enrolled in a prospective study, collect laboratory samples, and do assessments on a regular basis."
He sees room for improvement in several key areas.
"After the acute event, when children are left with significant weakness or paralysis, function can be recovered with intensive rehabilitation over a prolonged period of time and years," Dr. Greenberg says. "They may not return to 100-percent normal, but can achieve normal function even with isolated deficits. We need two things. One is for insurance companies to approve rehabilitation on an ongoing basis. It makes no sense to put a cap on the time allowed for this."
The second need is to stop the spread of incorrect folklore that even some clinicians perpetuate, he says.
"They say that whatever improvement you have after a year is all you will get, and that is factually incorrect. You must keep doing the hard work of rehabilitation, looking ahead to when the child is going to be 20 or 40 years old."
Dr. Greenberg also supports more investigations into variants or sub-types of AFM to determine which therapies, such as anti-inflammatories, may work best for certain patients. He's also advocating for stem-cell-based trials to restore muscle contractions when a patient becomes paralyzed.
Previous research has focused on approaches for normal infectious diseases, and even environmental agents are on the "possible" list as being a cause, the CDC has said.
What families should know and do
"My colleagues and I are awake at night, thinking and trying to make sure this doesn't become the next polio," he says.
Meanwhile, Dr. Greenberg makes himself available via email or phone call, 24/7, to clinicians worldwide who suspect a patient has AFM, often suggesting a transfer to a tertiary referral center or large hospital with more experience dealing with this often-mystifying condition.
"Families have a right to simply request a transfer to another facility," he says. "Doctors recognize when a patient might be better served somewhere else."
As an unpaid member of the Transverse Myelitis Association Board of Directors, Dr. Greenberg urges anyone, especially parents of children with AFM, to utilize the resources of the association, which include a helpline, support group network, resource library, and an active group of Hope Ambassadors. Start there to find other families who have "been there, done that," he says, and "get linked up" to people in your city or state.
That's a recommendation seconded by LaMay Axton, who urges parents to "be a voice for your child, and to understand the signs and symptoms. You may have to be forceful when you interact with healthcare professionals, since you know your child — and when something is wrong — better than anyone else."
LaMay has taken her advocacy around AFM to discussions with officials and researchers from both the CDC and National Institutes of Health, and will continue to interface with them this year. She, along with other parents and doctors, had criticized the CDC's tardiness in tackling AFM and not welcoming useful data from families affected by the disease.
"Now the national effort is moving in the right direction, and I'm so impressed with the outreach from the California Department of Health," she says. "They've set an example, and have brought such value to the community across the board."
Here's the department's resource page, with links to other valuable information, along with names, emails and phone numbers.
"Always remember, more knowledge is power," LaMay says.
In terms of prevention, the CDC reminds everyone to observe vigilant and correct hand washing — just as you would during cold and flu season — keep vaccinations current and use insect repellent to help prevent mosquito bites.
HealthCentral extra: Here's a YouTube video of LaMay discussing AFM.
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