‘INCREDIBLY RARE’
SPIKE IN CHILDREN’S DISEASE CAUSING CONCERN.
At the end of the summer, Rachelle Downton took a picture of her son Xavier in his brand new hockey gear. The fouryear-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. Seven weeks later, four weeks of it in isolation, he is still at the Children’s Hospital of Eastern Ontario 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 kindergarten student from Rockland, east of Ottawa, 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 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.
Doctors at the Montreal Children’s Hospital are taking care of two children with the disease, while two others who partially recovered have returned home. At Ste-Justine Hospital, two children are receiving care and being infused with intravenous immunoglobins to try to accelerate improvement.
“I’ve been working (in this field) for 14 years and I have not seen this before,” said Dr. Christos Karatzios, an infectious-diseases specialist at Montreal Children’s Hospital.
CHEO pediatric neurologist Dr. Sunita Venkateswaran said parents should not be overly worried. 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. He had begun school earlier that week and by Friday 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 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, said Downton.
During the first days in hospital, his condition worsened. At one point, he had such severe nerve pain 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,” said Downton. “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.
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 Hospital says it has seen about a dozen this month. It normally sees two a year.
In the United States, the Centres For Disease Control has reported upwards of 155 possible cases this year. Ninety per cent are under age 18 and the average age is four.
It is not clear what triggers the condition, which causes inflammation in part of the spinal cord.
The trigger for the condition is unknown, but MRI imaging shows that those with AFM have an inflammatory abnormality in a region of the spinal cord called the anterior horn cell. While it’s speculative, many doctors believe those who develop AFM may have an underlying genetic predisposition to the condition.
“Even with the spike of cases that we have at the moment, it’s still an incredibly rare condition,” said Dr. Jeremy Friedman, pediatricianin-chief at Sick Kids.
“When you think about how many kids will get a viral infection at this time of year, you’re literally talking about huge numbers. So a tiny, tiny percentage seem to go on to get AFM.
“So there does seem like there’s more to this than just the virus infection and there has to be some sort of genetic setup that makes these children vulnerable to that particular virus.”
While some patients make a full recovery, many continue to have continued muscle weakness. Long term outcomes are not known, according to the U.S. Centres for Disease Control.