FRIGHTENING DISEASE
Four-year-old Xavier Downton is slowly recovering at CHEO from a rare polio-like disease that leaves its young victims paralyzed, their prognosis uncertain.
At the end of the summer, Rachelle Downton took a picture of her son Xavier in his brand new hockey gear. The four-year-old was about to start hockey, like his older brother Caleb, and he couldn’t wait. Today, hockey is on hold and Xavier is slowly learning to walk again.
What appeared to be a case of the flu over Labour Day weekend turned into something much more terrifying for Xavier and his family. Seven weeks later, four weeks of it in isolation, which made it difficult for friends and family to visit him, he is still at the CHEO receiving intensive rehabilitation to try to regain use of his arms and legs.
“There are no words to describe it,” said Downton of her son’s ordeal. “Your heart is pulled out of your stomach so many times. You just want to trade places. I would rather it was me than him going through this.”
The Rockland kindergarten student is recovering from a rare, polio-like condition called acute flaccid paralysis (or myelitis) that has doctors in Canada and the U.S. on high alert. The condition, which can cause paralysis, is rare, but serious. Health officials are concerned because its numbers have increased this year in the U.S.
Xavier is one of only two children who have been treated at CHEO in recent months for the condition. At Toronto’s Hospital for Sick Children, there have been a dozen confirmed cases since September.
CHEO pediatric neurologist Dr. Sunita Venkateswaran said parents should not be overly worried about the rare condition. But if a child arrives at CHEO with symptoms of the paralysis “we take it very seriously.”
Xavier’s symptoms developed over the long weekend. On Friday he had a slight fever, said his mother. He continued to have mild fevers during the weekend and began complaining about pains in his arms and legs. But he was eating and drinking normally, and his parents, Rachelle and Chris, thought he had the flu or bronchitis.
On Tuesday, his mother took Xavier to the local clinic, which sent them directly to CHEO. Downton had to carry her son into the emergency department.
Doctors at CHEO quickly hooked him up to antibiotics and fluid and began to assess what was causing his symptoms. They first looked at meningitis and ruled that out, Downton said. He was given numerous tests, including a spinal tap and MRI, before a diagnosis was reached, Downton said.
During the first days in the hospital, his condition worsened. At one point, he had such severe nerve pain that he couldn’t wear clothes or even sheets and had to lie on his side. His neck was so stiff that he couldn’t turn his head and his skin was so painful that his parents couldn’t touch him.
He was, by then, completely paralyzed and was even having trouble expelling the CO2 he was breathing in. His parents were there 24 hours a day.
“It was really hard,” Downton said. “He was lying there with his eyes moving but he couldn’t move his head.
“One day you are walking and the next day you are stuck in your little body and can’t do anything. That was really, really difficult.”
Treatment with immunotherapy and a plasma exchange began to make a difference, and with treatment he slowly began to improve.
Xavier has a wheelchair, and when he is released from hospital in coming weeks he will continue to need one for a while, but Downton said his team of neurologists is optimistic. They are “really upbeat that he will walk again and run again, too.”
Meanwhile, rehab is painstaking but bringing improvement. Downton said they will stay at CHEO while Xavier continues to improve.
Acute flaccid paralysis has been around for some time, but recent spikes have caused widespread concern. In 2014, there were 25 cases across the country. Toronto’s Sick Kids says it has seen about a dozen this month. It normally sees two a year.