As rare as it is, acute flaccid myelitis (AFM) is spiking this year, with the Centers for Disease Control and Prevention (CDC) reporting that in 2018 there have been 127 confirmed or reported cases nationwide. Of those, eight are in Washington state (six are pending confirmation by the CDC).
Everything is fine with your child; the years ahead are full of promise. It’s all documented in smartphone photos of camping trips and birthday parties.
Then, in literally a 1-in-a-million chance and without warning, a parent’s nightmare becomes reality: You’re watching your child battle an extremely rare and mysterious paralysis.
For the growing number of parents whose child has been diagnosed with acute flaccid myelitis, (AFM), that complex scientific term becomes part of everyday language. The condition affects the area in the spinal cord called the gray matter and weakens muscles and reflexes. Many affected by AFM will experience a sudden paralysis in a limb, but some may also experience drooping face and eye muscles, difficulty swallowing or difficulty moving the eyes.
There is no known cause and no known cure.
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“It’s one in a million, but it’s 100 percent when it’s about you,” says Heather Werdal, a Bremerton mom who’s now the full-time caretaker for Hayden Werdal, 17, who was stricken with AFM four years ago.
As rare as it is, AFM is spiking this year, with the Centers for Disease Control and Prevention (CDC) reporting that in 2018 there have been 127 confirmed or reported cases nationwide, and of those, eight are in Washington state (six are pending confirmation by the CDC). Cases have been reported in King, Snohomish, Pierce, Skagit and Lewis counties.
Reporting of AFM only began in 2014. Since then, that figure has reached 386 cases nationwide, with 24 in this state. There has been one death attributed to AFM.
The cases have spiked around August and September of 2014, 2016 and now, this year. Why those months in particular is unexplained.
In October 2014, Hayden Werdal, then 13, developed a nasty cold. Nine days later, after complaining of a sore neck and tingling hands and feet, his neck quit supporting his head and he couldn’t lift his left arm at the shoulder. It progressed from there and he now needs a ventilator to breathe.
She remembers Hayden in 2014: “He’s 5-8, 5-9, 140 pounds. He did track in the spring.”
And when he was born: “He was perfectly healthy, exactly in the 60th percentile.”
And now? “From the neck down, he’s considered a paraplegic.”
Although 90 percent of cases of AFM are in children 18 and under — the average age is 4 — Hayden was in the older category.
The disorder arrives suddenly and without warning.
According to the CDC, although AFM is poliolike, tests are negative for the polio virus. There may be other causes, the agency says, such as other viruses, environmental toxins and genetic disorders. But there is nothing conclusive.
In some cases, the paralysis is severe, like it was with Hayden. In others, it might result in mild weakness in a limb. In some, there is quick recovery; in others, the paralysis continues.
The term “myelitis” comes from “myelin.”
Let’s say you’re picking up a pencil. The reason you immediately know what that feels like is that a group of neurons in your fingers are activated.
They fire up and send a signal that travels more than 150 mph the spinal cord and then the The brain contains about 100 billion microscopic neurons that process information.
Helping that signal travel so fast is insulating material called myelin that covers the nerve cells in the spinal cord.
But when myelin becomes inflamed, perhaps due to a virus, that signal gets disrupted. The signal slows way, way down. Suddenly an arm, a leg, go limp.
“We’re trying to find some commonality. We have epidemic intelligence officers interviewing all the families,” says Dr. Scott Lindquist, epidemiologist for communicable diseases with the state’s Department of Health. “Medication, over-the-counter medication supplement. Are you all on the same water system. Any commonality.”
The agency has fielded calls from many with theories, from vaccinations to, for some reason, grape juice.
Lindquist has three grown children. He understands perfectly well what the parents are going through.
“I tell my staff, ‘Don’t discount anything, as crazy as it sounds.’ Let’s think wide,” he says.
So it’s understandable why the parents have turned to two AMF pages on Facebook for solace, while exchanging any bit of news that might help. The public page has 1,083 members, and a closed one just for the parents has 512 members.
Heather Werdal is an administrator of both sites.
“I was scared at first,” son Hayden says. “I wasn’t sure what was going to happen to me. But it’s not the end of the world. I can’t give up.”
He adds: “I have a life to live. I have really good friends and a family that stayed with me. I’ve got to fight. Now I can walk in the pool. It’s just taking time.” In the pool, buoyancy provides opposition to gravity’s downward pull.
Other parents of children diagnosed with AFM soon find the Facebook page.
There is Olga Buiter, of Seattle. She works in contracts at Amazon. She and her husband, Alex, have a 7-month-old daughter, Zoe. Alex, a technical manager, asked that his last name not be used to protect his daughter’s privacy.
He worries a lot about his daughter’s limp right arm. He lifts it and it just falls down. He tries to get Zoe to grasp his finger with her right hand, but she can’t. She smiles.
Alex also worries about what will happen when Zoe goes to school; what if the other kids make fun of her?
Zoe went from having a slight fever late last month to Alex finding her one morning “with her right arm not doing anything.”
The family ended up at Seattle Children’s hospital, seeing a neurologist. Her discharge papers list a “primary diagnosis” of “right upper extremity acute flaccid myelitis.”
When the doctor told him his daughter had AFM, he Googled it on his smartphone.
“That’s when it started to hit us. Oh, s—-,” he says.
Zoe is back home now, her parents familiar with another medical term, IVIG, for intravenous immunoglobulin, a blood product prepared from the serum of between 1,000 and 15,000 donors per batch. It is the treatment of choice for patients with antibody deficiencies.
She’s also had a spinal tap to test for lesions (elevated white blood cells, indicating an infection) and has gone had an MRI (clean for lesions).
And now it’s waiting and continually checking
In the mornings, the first thing that Olga does is go to Zoe’s crib and check on her arm. It’s always in the same position.
Alex says that sometimes he thinks he sees movement in Zoe’s fingers.
“I don’t like fooling myself,” he says.