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For the past few years, a rare polio-like illness has been striking otherwise healthy children, often after a mild respiratory illness or fever. Cases of acute flaccid myelitis, or AFM, reached record-high numbers in 2018, and doctors still cannot pinpoint what causes the disease, how to treat it or how to stop it. Amna Nawaz explores how families are recovering from its devastating consequences.
For the past few years, a mysterious polio-like illness has been paralyzing children in the United States, often striking after a mild illness, peaking every other year, and reaching record highs in 2018.
It's called acute flaccid myelitis, or AFM. While it's extremely rare, cases were reported in 39 states last year. But doctors and researchers say they still don't know what causes it or how to stop it.
Amna is back with that story for our weekly segment on the Leading Edge of science, technology and medicine.
Will you hold my head?
I am holding your head.
Four-year-old Camdyn Carr begins every day like this.
Push, push, push. More down. More down.
Hours of therapy at Baltimore's Kennedy Krieger Institute.
Do you remember what that does?
Camdyn is relearning what his dad, Chris Carr, says he knew just weeks ago.
What else do you remember about him before he got sick? What was he like?
Oh, he was just hell on wheels. Can I say that?
I think you just did.
I mean, as soon as he hits the floor, he's nonstop until he goes to bed.
In late August, Camdyn developed a sinus infection, nothing major. But when he woke up one day dizzy, with a swollen face and having trouble walking, his mom and dad took him to the hospital.
Within days, Camdyn's body began to shut down. For a brief moment, his heart stopped.
What went through your mind at that moment?
I thought I was going to lose him. It was hard. But, you know, I had to be strong for him and show him everything would be all right, hard as it was. But, like, I asked the doctors, is this going to kill my child?
Camdyn was revived, but spent weeks in a medically-induced coma. When he woke up, he was paralyzed, unable to even talk. Tests confirmed he'd developed AFM.
When it strikes, AFM attacks parts of the spinal cord that control movement — sometimes paralyzing arms, legs, shoulders, hips and facial muscles. In severe cases, the respiratory system is also affected, making it hard to breathe.
But, strangely, feeling and sensation remain and cognitive functioning is unaffected. Day by day, millimeter by millimeter, Camdyn is slowly regaining movement, starting in his toes.
Researchers say the chances of getting AFM are just one in a million. In 2014, when the Centers for Disease Control and Prevention began tracking AFM, there were 120 confirmed cases. The next surge, in 2016, saw 149 cases. In 2018, that went up to 186 scattered across the country.
The CDC has now launched a task force to focus like a laser on the illness, and the National Institutes of Health, or NIH, an underwriter of the "NewsHour," has ramped up their research too. But, so far, very little is conclusive.
Dr. Anthony Fauci:
It's either a brand-new virus, it's an enterovirus, or it's an immune response.
Dr. Anthony Fauci is the director of the National Institute of Allergy and Infectious Diseases at the NIH.
It's frustrating that we don't have the answers, but we feel a degree of urgency here. We feel a responsibility to the public, to the mothers, to the children, that, even though it is rare, we feel a responsibility that this is a mystery and we have got to tackle it.
It certainly isn't frustration, 'Forget it, we can't figure that one out.' It's, 'We're going to figure it out.'
Another mystery? Some develop AFM after an illness, while others don't.
In a community you may have hundreds and hundreds of children who get infected, and only a rare one will get it.
More than 90 percent of AFM victims are children. The average age of those affected? Just 4 years old.
Back at Kennedy Krieger, just next door to Camdyn Carr is 4-year-old Ava Janeski. Always the performer, this was Ava and her twin brother just weeks ago. On a Sunday in October, she climbed statues in a park. Monday morning, she had a fever. Tuesday afternoon, she couldn't move her legs.
By Wednesday, she was on a ventilator, fighting to breathe.
It's very scary. And to watch them, especially at this age — she just turned 4 — you know, they don't understand, and they turn to you and give you that look to fix it, and when you can't, it's — it's — you feel very helpless.
Will you hold my hand?
I will hold your hand. And that's what we have been trying to do a lot of, is just a lot of hand-holding and just trying to reassure her.
Ava must now retrain her atrophied muscles how to move in very basic ways. The work can be excruciatingly painful. But, in the absence of a cure for AFM, therapy is all that can be done.
Ava's doctor, Cristina Sadowsky:
Dr. Cristina Sadowsky:
If you want to be a really good pitcher, you're going to practice pitching over and over and over again. So, that's one of the things that we can tell the parent is that, 'If you practice, if your child practices this specific movement hundreds, thousands of times, we have the chance of getting you there.'
Among the most severe cases of AFM, experts say they have yet to see a child make a full recovery. But, they say, with early intervention and ongoing intensive therapy, they have seen patients make incredible progress.
In 2016, the entire Bottomley family in York County, Pennsylvania, came down with severe colds. But only Sebastian got AFM. When he started stumbling as he walked, his mom, Christa, knew something was terribly wrong.
And Bastian has always been our most coordinated, athletic child. He's always been very vigorous, very wild, high-energy. And for him to do anything uncoordinated was out of the ordinary.
More than 2,000 hours of physical therapy later, Sebastian can move his hands and arms more. And $100,000 worth of special equipment — about half covered by insurance — have helped him regain some hip and leg muscle. But his mom says some things will never be the same.
It was very hard to watch me see my child's personality change before my eyes. And, sometimes, I would watch and be like, 'Do I even know my own child?' But, as he was going through a huge trauma, I — to me, it was surreal. But, to him, he was very much living this as a disaster second by second.
This is Chicky the chipmunk.
Chicky the chipmunk?
Yes, it's a little hilarious name.
But experts say children's resilience after the initial disaster is what makes their recovery possible.
Kennedy Krieger physical therapist Courtney Porter:
I find that kids are still really motivated.
Kind of any way that you can teach a kid to do what he wanted to do, whether it's, you know, pick up a toy from across the room or just go visit a friend across the room, like, they will want to do it.
Whether that means they walked and ran like they used to, or we put them in a wheelchair and they drove over, I find they're still just super motivated to do it, and they're going to figure out a new way.
Do you have any doubt that Sebastian will walk again one day?
Of course I do. Of course I do. That's not something I tell him, though.
Everybody has doubts. But what — if I had — if I had to put my money on it? No, he is going to walk someday. And, also, that's something that I need to believe that in order to push this hard. So, my official answer is: I have no doubt he is going to walk someday.
With a little assistance and a lot of grit, Sebastian continues to move forward.
He's coming. He's coming.
His mom hopes for more awareness and information about AFM, so that other kids won't have to follow in Sebastian's footsteps.
Push those legs. Push! Push!
For the "PBS NewsHour," I'm Amna Nawaz in York, Pennsylvania.
Watch the Full Episode
Amna Nawaz serves as co-anchor of PBS NewsHour.
Jason Kane is a PBS NewsHour producer, focusing on health care and national affairs.
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