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Stafford infant battling rare and mysterious polio-like disease called AFM

Free Lance-Star - 11/24/2018

Nov. 24--As the parents of Ryan Brooks talk about "this horrible thing" that has affected their infant, who turns 1 next month, the baby plays happily on the floor.

Ryan reaches for toys, smiling and making revving noises as he rolls a plastic car back and forth. Stretched out on his stomach, he kicks along to the same rhythm--and only then is it obvious that something is amiss.

Ryan is moving only one leg.

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While his left knee bends and kicks, his right leg is limp. He can't get on both knees to crawl, so he pulls himself along, doing a baby version of an Army crawl. When he scoots around while sitting, he sometimes inadvertently does the splits, his right leg dangling at an awkward angle.

Ryan wasn't born with this ailment. It happened as a result of acute flaccid myelitis, the polio-like condition that's been on the increase since 2014. The Centers for Disease Control and Prevention are investigating 430 confirmed cases since that time, with 106 this year alone.

While the CDC says there's no specific action to prevent AFM--because it doesn't know what causes it or triggers the condition--Ryan's parents, Donald and Valerie Brooks of Stafford County, "want to get awareness out" of what happened to them, the father said.

"The scary part is, this was just a cold" that morphed into potential paralysis, he said.

"We want parents to know that if they see any weakness in any limb, that's a big, red flag," he said, adding they should seek immediate medical attention.

It's not clear if Ryan's case is the first in the area or Virginia, simply because of the way the condition is tracked.

As of last week, there had been no confirmed cases of AFM in the Virginia Department of Health's northwest region, which covers about 30 cities and counties--including Fredericksburg and surrounding localities. The region stretches from the central Shenandoah area to central Virginia.

Ryan's case may not have been reported locally because he was diagnosed in Washington.

The Virginia Department of Health sent out a Nov. 8 letter saying it had recently received reports of individuals with signs and symptoms consistent with AFM, according to State Health Commissioner M. Norman Oliver.

The condition isn't on the list of diseases, such as tuberculosis, that must be reported to the health department, but is in the category of "an unusual occurrence of disease of public health concern," Oliver wrote.

'THIS IS TOO WEIRD'

For Ryan and his family, the mysterious illness started last month when a virus made its way through the house.

Ryan, who will celebrate his first birthday on Pearl Harbor Day, is the youngest of four. His mother has three older children from a previous marriage: Carter, 12; Aiden, 10; and Raegan, 8.

Ryan, Raegan and their mother got a cold that came with sneezing and coughing, a runny nose and fever. Carter had a sore throat as well.

While the virus kept the mother home from her job as a title agent for several days, it lingered with the baby. After several days of a low-grade fever and no improvement, she took him to his pediatrician.

Tests for strep throat and flu came back negative. The doctor said he probably had a virus, one of many going around.

Valerie Brooks noticed that Ryan wasn't using his right leg when he crawled, but he'd been sick for several days and wasn't sleeping well. She thought he was over-tired.

After the doctor's visit, she went to her mother's house, and both she and the baby napped. When Ryan awoke, he didn't stand up in the crib. Even odder was the way he kicked with only one leg when she changed his diaper.

She and her mother, Gail Miccio, stood over him, poking at the limp leg. Had he gotten it stuck while crawling and injured it somehow? Was it dislocated, they wondered?

He had no reaction to their prodding.

"Mom and I were like, 'This is too weird,' " Valerie Brooks said, and they headed for the Emergency and Outpatient Center at Lee's Hill because that was the closest to her mother's house.

After examination, the doctor said Ryan needed to be seen by a neurologist and would require tests and spinal taps that couldn't be performed locally.

'SUPERHERO SERUM'

That was the evening of Wednesday, Oct. 17, and the family headed by ambulance for Children's National in Washington. A whirlwind of tests and blood work began, and the child initially was in isolation because it wasn't clear what disease might be causing the problems.

Over the next two days, Ryan's condition worsened. The limpness in his leg spread throughout his body. He couldn't hold up his head, and if his parents put him in a sitting position, he would slump over.

"He was just like a bag of jelly," his mother said. "None of his muscles were engaging."

Ryan was treated with heavy-duty antibiotics and steroids, then got an intravenous immunoglobulin treatment, or IVIG. Valerie Brooks called it a "superhero serum" of antibodies that help fight a variety of infections.

She believes the treatment helped her baby stabilize quickly before the paralysis became permanent elsewhere.

"He's actually kind of lucky," said Donald Brooks, who does electrical work for the Washington Metropolitan Transit Authority.

"He's very lucky, relative to other kids," Valerie Brooks added.

AFM causes inflammation in the spine, which brings on sudden weakness in the arms or legs. Other side effects are facial weakness, difficulty moving the eyes, drooping eyelids or difficulty swallowing, according to the CDC. In most severe cases, the muscles involved with breathing weaken and patients must be put on ventilators.

'A BIG QUESTION MARK'

For the Brookses, the question isn't so much what virus did Ryan catch that caused AFM because his mother and sister seemingly had the same bug. The issue instead is, why did it impact him the way it did?

Less than two in a million children in the United States will have this kind of reaction to a virus and develop AFM every year, the CDC reports.

"This is like winning the reverse lottery," Ryan's mother said. "It's such a big mystery."

She's hopeful her son can make a full recovery because of treatment he received. He was hospitalized for 20 days, first in Washington and then at Children's Hospital of the King's Daughter in Norfolk for intense physical therapy.

The family is continuing the sessions at Stafford and Fredericksburg Physical Therapy in North Stafford. Valerie Brooks said the owner, Peter Horricks, and his son, Taylor, are willing to work with her to get Ryan therapy every day.

While she's optimistic, her husband said he's read too many accounts of paralysis. So little is known about the condition and its long-term affects, he said.

"Everything is a big question mark," he said.

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(c)2018 The Free Lance-Star (Fredericksburg, Va.)

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