Boy struck with polio-like illness leaves hospital

Four-year-old recovering from polio-like syndrome back home and starting school

Nearly three months after he arrived at CHEO suffering from a rare polio-like condition, fouryear-old Xavier Downton is back home in Rockland and preparing to return to school.

Life is quite different for Xavier than it was before he was rushed to CHEO on Sept. 4 suffering from what his family thought was the flu. The boy, who was looking forward to starting hockey this fall, now uses a wheelchair, something doctors and therapists believe is temporary.

“They think he is going to walk again and probably run again,” his mother Rachelle Downton said. “It just takes time.”

And Xavier now has very little use of his right arm, which has forced him to become left-handed, something he has mastered handily says his mother.

There are many challenges ahead for Xavier and his family as a result of the damage done by acute flaccid myelitis, the rare condition that felled him on Labour Day weekend.

Acute flaccid myelitis, or AFM, is the term used to describe the sudden onset of weakness in one or more limbs as a result of inflammation of the spinal cord. In Xavier’s case, his legs and one arm were seriously affected. At its most severe, said his mother, he was virtually paralyzed in his hospital bed and only moving his eyes.

Most patients had a mild respiratory illness or fever, consistent with a virus, before becoming ill. None of the cases has been related to the polio virus, although the impact is similar to polio. It is a condition that is causing growing concern for public health officials this year. Both Canada and the United States have seen spikes in the illness that mainly affects young children and is not well understood.

The Public Health Agency of Canada has confirmed that there have been 48 probable cases of AFM across the country in 2018, 25 confirmed and 23 being investigated. In the United States, there have been 250 cases of the illness.

Since U.S. public health officials began tracking it in 2014, it has followed a pattern of spiking every second year. This year’s numbers are the highest, and officials don’t know what is driving the increase.

The illness peaks between August and October and commonly strikes children around the age of four.

Xavier’s case was the second seen at CHEO this year. Downton said she met the family of the other child (a three-year-old girl) who had AFM. She was not as seriously affected as Xavier, said Downton. They came to see Xavier and his family in the hospital.

Xavier spent the last few weeks of his 10-plus week hospital stay undergoing intensive physiotherapy to try to get nerves and muscles working again. A major focus has been on helping him relearn to walk.

Xavier will be undergoing therapy in school and will continue to visit CHEO for physiotherapy and occupational therapy, said his mother. The family will also be spending time in the pool at the local Y helping Xavier to work his muscles.

The family has ordered a wheelchair for Xavier (they are currently using a loaner). They have had to do some modifications to their house to accommodate him, including installing a ramp in front and turning a play room on the main floor into his bedroom, complete with a hospital bed.

Xavier is keen to return to senior kindergarten two days a week, Downton said. “He is looking forward to seeing his friends.” But he tires easily, which could be a challenge at first.

Downton said she expects Xavier will be in school full time by January. “He will have a routine. It will help build stamina. I really think that once he is at that point he will be more encouraged to work even harder.”

The next step is for him to learn to use a specially designed walker to help move him closer to walking. And then the family has to decide if Xavier should undergo surgery to transplant nerve fibres in an effort to help him control his right elbow and shoulder.

While the family carefully marks each milestone of Xavier’s progress, researchers across North America are working to understand what causes AFM and how to protect people from it.

For now, Public Health Agency of Canada advises people to reduce their risk by frequent hand-washing and covering their coughs.

JULIE OLIVER Four-year-old Xavier Downton became ill in September with what seemed like a flu, but within days he was paralyzed. Xavier, seen here with his mom Rachelle, was diagnosed with acute flaccid myelitis. He is one of two children diagnosed at CHEO with the illness, and is now learning to walk again.

JULIE OLIVER Rachelle Downton says her son Xavier is looking forward to returning to kindergarten full-time in the new year. The four-year-old is relearning to walk after he was paralyzed by an illness in September.

DOWNTON FAMILY PHOTO Before falling ill on the Labour Day weekend, four-year-old Xavier Downton was looking forward to his first season of playing hockey.