OUTLOOK UNCERTAIN
Child works to recover from mysterious illness that paralyzed him
When Nicole Beck thinks back to several months ago, she remembers motion. Her 2-year-old son, Jackson, climbing on her, wrestling in the living room, running in circles around the first floor of the house with his Batman cape streaming behind him. “Every night we used to have a dance party before bed,” she said.
The last Monday in September, Jackson Beck started coughing. Less than a week later, he was unable to hold his head up or move his limbs, diagnosed with a polio-like condition that has affected about 200 children nationwide this year, and at least six locally.
Since then, Jackson, of Upper St. Clair, has been in UPMC Children’s Hospital of Pittsburgh or in the Children’s Hospital Rehab Unit at the Children’s Home of Pittsburgh. He is tentatively scheduled to go home next week. On Saturday, a spaghetti dinner is being held by a neighbor to raise money for the family.
“I bet you can’t make your shoulder dance,” Jackson’s father, Bobby Beck, said teasingly last Sunday, standing across his room at the rehab unit, decorated with Christmas lights, superhero posters and artwork. As a grin spread across Jackson’s face, he raised his right shoulder.
“I’m gonna do it again,” Jackson said. “You’re gonna do it
again? Don’t do it!” countered his dad. “Yes!” playfully exclaimed Jackson, who will be 3 next month, his shoulder bobbing up and down.
“We try not to think too much about why, or how it happened.” — BOBBY BECK
That shrug of his right shoulder was the most significant motion that Jackson had regained since being diagnosed with acute flaccid myelitis, or AFM. “He’s made improvements,” said Mr. Beck, a physical education teacher at Woodland Hills High School. “It’s all just really slow.”
Jackson’s neck strength has improved, he can intermittently move the fingers on his right hand and there has been possible but not reliable movement of his left shoulder. He is on a ventilator for breathing assistance and has a feeding tube, though he can eat by mouth if he chooses.
“The literature is showing that almost all these kids will have some long-term functional issues — some do have a significant recovery,” said Amit Sinha, medical director of the Children’s Hospital Rehabilitation Unit, who is overseeing Jackson’s care there. “The longer you go that you don’t have progress, the more likely it becomes that this is their new functional baseline.”
In part because AFM is so new, the prognosis is uncertain.
AFM was officially identified in 2014 after doctors noticed a pattern of children suffering paralysis or limb weakness that appear after coming down with a cold or fever. Though some cases have been tied to an underlying virus, such as enterovirus D-68 or A-71, many, including Jackson’s, have not.
The cases have spiked on a biennial basis — 120 in 2014, 22 in 2015, 149 in 2016, 35 in 2017 and thus far 196 in 2018, according to the Centers for Disease Control and Prevention. The 78 cases — including Jackson’s — with onset in September 2018 are by far the highest in a single month.
Experts are unsure about many aspects of AFM, including what causes it, why it seems to be on a biennial cycle, why it almost exclusively affects children and how to prevent it. To the extent that it is tied to a virus, doctors recommend prevention tips such as routine hand washing and sneezing into the crookof an elbow.
“There’s much more we don’t know about AFM than what we do know,” said John Williams, chief of the division of pediatric infectious diseases at Children’s Hospital of Pittsburgh, speaking on an episode of the hospital’s podcast, “That’s Pediatrics.”
In Jackson’s case, the cough that he came down with that Monday turned into wheezing on Tuesday, when his parents took him to the pediatrician and he went home with a nebulizer for breathing treatments. Thursday, he was sent home from day care because of a 100.8-degree fever and began vomiting after he came home. Friday, he began stumbling on his left leg while walking, and his family made their firstever trip to the Children’s Hospital emergency room, which sent him home with a tentative diagnosis of transient synovitis, or hip inflammation, which was thought to have been brought on by his respiratory infection. On Saturday, he started losing the use of his right leg as well. Sunday morning, he could no longer sit up on his own, and hours later, he was intubated in the Children’s Hospital pediatric intensive care unit.
Doctors suspected Guillain-Barre syndrome until they saw Jackson’s MRI — and compared it with the MRIs of two other children admitted the night before with similar symptoms — all showing affected areas in the gray matter of the spinal cord: “Two other families came in within 24 hours of us,” Mr. Beck said. “We’d never been in the same place at the same time.”
The total of cases diagnosed at Children’s has since risen to six, with five from Allegheny County and one in Washington County. Two other potential cases — one from Westmoreland County and another one from Allegheny County — are being investigated.
Jackson’s sister, who is now almost 8 months old, was not affected. Neither were any of the kids in his day care. All the kids diagnosed at Children’s were from different municipalities.
“I have pictures of that weekend — all of us hanging out,” said his mom, a project manager for an engineering company. “We all had the same cold. His body chose to react that way. It’s very mysterious.”
Of the kids in Pittsburgh diagnosed with AFM, Jackson is the most severely affected.
In his room at the rehab unit, doctors are trying various therapies to help Jackson improve. They are trying electrical stimulation therapy, which sends an electric signal to try to stimulate the nerves — or, as Jackson calls it, his tickle machine. Other therapies involve just getting him out of bed and moving around, such as into his standing wheelchair, i.e., “rocket ship.”
When another person is guiding him “hand over hand,” helping him move his fingers, Jackson does activities like finger painting and drawing, or playing a toy keyboard. He also plays freeze dance with those in his room, ordering them to start and stop dancing.
In his room last Sunday, he sang “up and down, up and down” in tune with a video of the song “Wheels on the Bus” on his iPad. “We never let him have electronics until recently,” said his mom, watching Jackson with the iPad. “This could be his world.”
Jackson’s facial movements and speech are unaffected, and his vocabulary has soared in his months in the hospital, where he has interacted mainly with adults. He now uses phrases like “My eyes are heavy” and “What in the world?” laughs his mom.
He knows the names of all the nurses and staff, joking around with them at times by calling them the wrong name on purpose. “He continues to make us laugh,” Dr. Sinha said. “He’s a joy to be around — very bright, very loquacious, he learns very quickly. He asks to see his chest X-ray and he’s picked up a lot of medical terminology. For the most part, he’s remained very upbeat and so have his parents.”
After Jackson goes home, the Becks will care for him there with significant assistance — they qualify for 20 hours per day of nursing care during the week and 16 hours per day on the weekend. He will also attend preschool three days a week at the Children’s Home.
He is being fitted for a power wheelchair that he can control with his chin or the back of his head. While his parents wonder about the consequences of putting a soon-to-be 3-yearold in charge of a 300-pound chair, they also want to give him some freedom. “We just want him to be comfortable and have as much independence as possible,” said his dad.
They are hopeful that in the future they can wean him off of the ventilator. There are also medical procedures they haven’t tried yet, such as a nerve transplant procedure that has helped other kids with AFM.
A trial outing last weekend to the Lego exhibit at the Carnegie Science Center was successful, though challenging. Weather and health permitting, they hope to take him on a second outing Saturday, to a spaghetti dinner fundraiser that a neighbor is hosting from 3 to 8 p.m. for them at the Westminister Presbyterian Church in Upper St. Clair. Tickets can be purchased online at the Take Action for Jackson Facebook page.
With huge expenses looming such as an accessible van and a remodeling of their first floor for Jackson’s wheelchair, friends have also set up a gofundme page for them at www.gofundme.com/jackson-beck039s-fight. The Becks are incredibly grateful for the support from family and friends and for the medical care that Jackson has received.
“We try not to think too much about why, or how it happened,” Mr. Beck said. “It is what it is. You don’t know what the future holds.”