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Nearly three months after arriving at CHEO, with a rare polio-like illness, four-year-old Xavier Downton has returned home to Rockland and is preparing to return to school.
Xavier's life is quite different from what was before being sent to CHEO on September 4, suffering from what his family thought was the flu. The boy who was eager to start hockey this fall is now using a wheelchair – which doctors and therapists consider to be temporary.
"They think he's going to walk again and probably run again," said his mother, Rachelle Downton. "It just takes time."
And Xavier has now very little use his right arm, which forced him to become left-handed, something he mastered well said his mother.
Xavier and his family face many challenges because of the damage caused by the flaccid acute myelitis, the rare disease that struck him on the weekend of Labor Day.
After falling ill on Labor Day weekend, Rachelle Downton's son Xavier, aged four, was diagnosed with flaccid acute paralysis. The rare disease has recently gained momentum in the United States, raising concerns here and here in Canada. There have been two cases at 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 one arm were severely affected. In his most serious form, said his mother, he was virtually paralyzed in his hospital bed and was only moving his eyes.
Before getting sick, most patients had mild respiratory illness or fever, compatible with a virus. None of these cases have been badociated with the polio virus, although its impact is similar to that of polio. It is a disease of increasing concern to public health officials this year. Both Canada and the United States have experienced an outbreak of the disease that primarily affects young children and is not well understood.
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The Public Health Agency of Canada has confirmed the existence of 48 probable cases of MFA across the country in 2018 – 25 confirmed and 23 investigated. In the United States, there have been 250 cases of the disease. Since US public health officials began tracking it in 2014, the trend has been rising every two years. This year's figures are the highest and officials do not understand what motivates this increase.
This 2014 electron microscope image made available by the Centers for Disease Control and Prevention shows numerous enterovirus virions of spheroidal form D68 (EV-D68). Doctors suspect a mysterious paralyzing disease, acute flaccid myelitis, could be linked to a type of enterovirus, such as EV-D68 or EV-A71. An outbreak of diseases at EV-D68 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 generally affects children around four years of age.
Xavier's case was the second time at CHEO this year. Downton recounted that she had met the family of the other child – 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 hockey season. Instead, he was diagnosed with acute facial paralysis.
Family photo /
Postmedia
Xavier spent the last weeks of his stay in the hospital for more than 10 weeks in intensive physiotherapy to try to restore the nerves and muscles. The main goal was to help him relearn how to walk.
Xavier will be attending therapy at school and will continue to visit CHEO for physiotherapy and occupational therapy sessions, his mother said. The family will also spend time in the local Y pool to help Xavier work his muscles.
The family ordered a wheelchair for Xavier (they are currently using a loan). They had to make modifications to their home to accommodate him, including installing a ramp in front and transforming a ground floor game room into his bedroom, equipped with a hospital bed.
Xavier and Rachelle Downton.
Julie Oliver /
Postmedia
Xavier is looking forward to returning to the children's garden two days a week, said Downton. "He can not wait to see his friends." But he gets tired easily, which could be a challenge in the beginning.
Downton said she expects Xavier to go to school full time in January. "He will have a routine. This will help develop endurance. I really think that once he's at this point, he will be more encouraged to work even harder. "
The next step is for him to learn how to use a specially designed walker to help him get closer to walking. And then, the family has to decide if Xavier has to undergo surgery to transplant nerve fibers to help him control his right elbow and shoulder.
As the family carefully tracks every step of Xavier's progress, researchers in North America are struggling to understand the causes of AFM and how to protect them.
For now, the Public Health Agency of Canada recommends that people reduce their risk by washing their hands frequently and covering themselves with coughs.
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