'Oh, no. This is going to be bad': Boy's recovery from polio-like illness a long one

Rachelle Downton hoped her son Xavier, 4, would take a few steps with a walker for Christmas. That likely won't happen, and doctors say his recovery from a frightening and mysterious ailment may take much longer.

Acute flaccid myelitis (AFM) is a rare illness that resembles polio. It mainly hits children. Why isn't known. The spinal cord is affected, which can cause arms and legs to go limp with stunning speed.

CBC Radio's White Coat, Black Art host Dr. Brian Goldman wrote about the illness in October after he received an advisory asking front-line physicians to be on the lookout for children with sudden weakness in their limbs, particularly after a viral infection.

Xavier's case is one of 37 confirmed occurrences of a broader illness called acute flaccid paralysis or AFP this year, according to the Public Health Agency of Canada. Another 26 are under investigation, the agency said. On average, there are between 27 to 51 cases each year in this country.

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The incidence of AFM is estimated at less than one to two in a million. So far this year, the U.S. Centers for Disease Control and Prevention reported 158 confirmed cases of AFM.

Last month, Goldman visited the Downton family in Rockland, Ont., about 40 kilometres east of Ottawa, for a glimpse into Xavier's arduous road to recovery. Specialists say people with AFM have roughly a year from when the illness starts to when deficits could become permanent.

'Within 3 to 4 hours, everything can go limp'

In August, Xavier suited up in full hockey gear, set to follow in his brother Caleb's footsteps on the ice. Now Xavier's right arm is paralyzed, and he can barely stand on his own for an instant. 

Xavier's illness began with a fever on the Friday night of Labour Day weekend. Aches and pains worsened over the holiday. Overnight, Xavier kept saying his right arm wasn't working.

"It could be like your child is OK … and within three to four hours, everything can go limp," his mother recalled.

By Tuesday morning, Xavier's body was getting stiffer. When his arm went numb, Xavier's parents took him to a clinic, where it recommended he go to the Children's Hospital of Eastern Ontario (CHEO).

Doctors at CHEO initially said they were worried about meningitis. "I'm going, 'Oh, no. This is going to be bad,'" Downton said. "There's a sense of panic but keeping it inside of me, obviously."

Xavier's mother was amazed at how calm her son was, just crying a few times during a lumbar puncture or spinal tap. Nerve pain set in, and Xavier no longer wanted his parents' touch except to turn him. His limbs were almost completely paralyzed.

"How come this kid is not panicking or crying because you're stuck in your body?" his mother thought.

Mother suspected AFM

Downton suspected her son had the same mystery illness that she'd heard was affecting children in the United States.

Xavier's doctors ruled out meningitis. Dr. Asif Doja, head of child neurology, said he and his colleagues at CHEO didn't suspect a cluster of AFM until they started hearing about cases across Canada and the U.S. They realized Xavier's symptoms fit perfectly.

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"The real worrisome aspect with these patients is that the weakness can sometimes affect their neck and their breathing muscles, and then some patients need to have a breathing tube and be put in the [intensive care unit]," Doja said.

Xavier's parents stayed by his bedside 24 hours a day for three weeks. Dad Chris Downton returned to work when they realized Xavier was getting better.

"He's a prankster," his mother said, of how they knew Xavier was returning to his old self. "This is going to sound funny, but he always liked to … shake his butt like a little dance. 'I'm shaking my booty.' Well, he tried to do it lying down, and I'm going, 'OK, you're trying to move.'"

Long-lasting weakness

What are the prospects for recovery for Xavier and others affected by AFM? With a condition so rare, it's tough to predict with any accuracy what their future will look like.

Researchers are only starting to get a handle on that. In 2014, doctors at Children's Hospital Colorado treated some of the first cases in the U.S.

Dr. Samuel Dominguez, a specialist in infectious diseases, helped to discover a link between AFM and a germ called enterovirus.

Dominguez and a team of neurologists, infectious disease physicians, physical therapists, occupational therapists, speech therapists and psychologists followed 12 children for a year.

Unfortunately, Dominguez said, most of the children still had lasting deficits after a year. Among those most severely affected, the "proximal" muscles closest to the trunk of body tended not to recover fully, and the kids had persistent weakness or paralysis.

The affected muscles include those in the thigh, hindquarters and pelvis, which are key to helping kids to stand up, chase and kick a ball.

"The good news, I think, was that the children through sort of extensive rehab programs did gain some functional improvements in terms of learning how to compensate for the weaknesses that persisted," Dominguez said.

Dominguez said the hospital has seen more kids with AFM show upper arm weakness rather than the leg weakness that's common with poliovirus.

Home again

Ten weeks after he was admitted, Xavier was discharged from CHEO on Nov. 13. He continues to do physiotherapy with his parents to get him to sit up on his bed and to stand on two legs.

Xavier's mother has joined a social network of parents in the U.S. and Canada whose children have AFM to trade information and support each other through the many unknowns of the illness and recovery.

Xavier has returned to attending school a couple of half days a week. Born right-handed, he now colours and uses a game controller with his left hand.

For his mother, it is a sign of his enduring resilience.

"I couldn't believe it. Even the OT's like 'What?'" she said. "It's like he never changed hands. They're four years old. Children at that age are very amazing that way. And that's their hope at CHEO and what they see a lot in children at that age is the sky's the limit."

Written by Amina Zafar. Produced by Jeff Goodes.