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Ontario boy with poliomyelitis syndrome adjusting to home life



Almost three months after he arrived at CHEO, suffering from a rare polio-like condition, four-year-old Xavier Downton is back in Rockland and getting ready to go back to school.

Life is very different for Xavier than he was before he was rushed to the CHEO on September 4, suffering from what his family thought was the flu. The boy who was eager to start hockey this fall now uses a wheelchair – something doctors and therapists believe to be temporary.

"They think he's going to walk again and probably run again," said his mother, Rachelle Downton. "It only takes time."

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

There are many challenges ahead for Xavier and his family as a result of the damage caused by acute flaccid myelitis, the rare condition that knocked him out over Labor Day weekend.

After falling ill over the Labor Day weekend, Rachelle Downton's four-year-old son, Xavier, was diagnosed with Acute Flaccid Paralysis. The rare disease has recently increased in the United States, causing concern here and there in Canada. There were two cases in CHEO.

Julie Oliver /

Postmedia

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 an arm were seriously affected. In its most severe form, his mother said, he was practically paralyzed in his hospital bed and just moving his eyes.

Most patients had a mild respiratory illness or fever, consistent with a virus, before becoming ill. None of the cases was poliovirus-related, although the impact is similar to that of polio. It is a condition that is causing increasing concern for public health authorities this year. Both Canada and the US have seen peaks in the disease that affect mostly young children and are not well understood.

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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 investigated. In the United States, there were 250 cases of the disease. Since US public health authorities began tracking him in 2014, he followed a peak pattern every second year. This year's numbers are the highest and employees do not understand what is driving the increase.

This 2014 electron microscope image provided by the Centers for Disease Control and Prevention shows numerous Enterovirus-D68 virions (EV-D68) in spheroid form. Doctors suspect that a mysterious paralyzing disease, acute flaccid myelitis, may be linked to a type of enterovirus, such as EV-D68 or EV-A71. A peak in EV-D68 disease coincided with the first mysterious wave of paralysis cases in 2014.

Cynthia S. Goldsmith, Yiting Zhang /

AP

The disease peaks between August and October and affects children around the age of four.

Xavier's case was the second seen at CHEO this year. Downton said he met the other child's family – a three-year-old girl – who had AFM. She was not as badly affected as Xavier, Downton said. They came to see Xavier and his family at the hospital.

Before getting sick on Labor Day weekend, Xavier Downton, 4, was looking forward to his first season of hockey. Instead, he was diagnosed with acute facial paralysis.

Family photo /

Postmedia

Xavier spent the last weeks of his hospital stay of more than 10 weeks in intensive physical therapy to try to rehabilitate nerves and muscles. One of the main focuses was to help him relearn how to walk.

Xavier will undergo therapy at the school and will continue to visit CHEO for physical therapy and occupational therapy, his mother said. The family will also spend time at the pool at the local Y helping Xavier work his muscles.

The family ordered a wheelchair for Xavier (they are using a loan). They had to make some modifications in their home to accommodate it, including installing a ramp in the front and turning a game room on the main floor into their bedroom, complete with a hospital bed.

Xavier and Rachelle Downton.

Julie Oliver /

Postmedia

Xavier is eager to return to senior kindergarten two days a week, Downton said. "He's anxious to see your friends." But he tires easily, which could be a challenge in the beginning.

Downton said he expects Xavier to be in full-time school by January. "He will have a routine. This will help build resistance. I really think that when he's at that point, he'll be more encouraged to work even harder. "

The next step is for him to learn how to use a specially designed walker to help bring him closer to the walk. And then the family has to decide whether Xavier must undergo surgery to transplant the nerve fibers in an effort to help him control his right elbow and shoulder.

As the family carefully marks every milestone in Xavier's progress, researchers in North America are working to understand what causes AFM and how to protect people from it.

For now, the Public Health Agency of Canada advises people to reduce their risk with frequent hand washes and coughing.

epayne@postmedia.com


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