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Tackling Tourette Syndrome
By Richard Hutton
April 29, 2016
Amanda Juby is the face behind Tourette Canada’s Hamilton Halton Niagara Chapter. Juby, who has been diagnosed with Tourette Syndrome, had been running her own informal support group after her son, Logan, was diagnosed with TS three years ago.
NIAGARA FALLS — Amanda Juby always knew she had Tourette Syndrome, even before she was finally diagnosed in her twenties.
So when her then six-year-old son, Logan, began displaying symptoms, in his case anxiety followed by tics, she again knew. But getting a diagnosis wasn’t easy. She heard it all. Logan was said to be autistic, he had a tic disorder; he had attention deficit disorder.
She finally got the answer she knew all along after switching family doctors and consultations with specialists.
“It seems to be a struggle for quite a lot of parents,” Juby said.
As there is no cure for Tourette Syndrome, neuropsychiatric or brain-based condition, Logan began to be prescribed medication to address symptoms.
That’s because TS isn’t just about tics — both physical and verbal. People who are diagnosed most often suffer from comorbid conditions ranging from anxiety and obsessive compulsive disorder to rage.
“He was on a medication and he began to act strange,” Juby said. “He would have this look on his face that was psychotic and he’d laugh.”
The mother of four wasn’t the only one noticing. His teachers at school also saw the change.
Logan is now off pharmaceuticals and is being treated with CBD (Cannabidiol) oil, a legal compound found in marijuana, and magnesium. Amanda has also worked with his school to develop an Individualized Education Plan (IEP).
“We started something new (for Logan) at the school,” Juby said. “At any time he can take 20 minutes of run time in the gym.”
That allows him to “run out” his tics, Juby said.
Juby, meanwhile, reached out through Facebook to other parents going through the same thing through a group she formed called Niagara Tourette. There she met others and the members would meet informally over coffee at Juby’s home. Seeking more, she contacted Tourette Canada to see if there was help available in the city.
As it turned out there wasn’t any group.
As a result, Juby merged her group with the Hamilton Halton Niagara chapter of Tourette Canada. The group held its first meeting on April 24 at Betty’s Restaurant in Chippawa. The meetings are designed as a means of support for parents, educators and caregivers of children with Tourette Syndrome as well as adults who have been diagnosed.
“There was 15 of us who turned out,” Juby said. “I definitely was not expecting that.”
Among the attendees was someone Juby went to high school with.
“A lot of people didn’t give him a chance in Grade 9,” Juby said. “Like, me, he got a job in construction.”
That’s because Juby is one of the 10 per cent of the people diagnosed with coprolalia
— the swearing tic.
“You really couldn’t have me at the front desk in an office,” Juby said with a laugh.
And that’s the big misconception with TS, she added.
“I think its something that has come from the movies.”
According to Tourette Canada, TS is actually a common medical condition affecting anywhere from 1 to 3.8 per cent of the population, depending on which study is taken into account. While TS affects three to four times as many boys as girls, both boys and girls can have mild or severe symptoms.
The next meeting for Tourette Canada’s Hamilton Halton Niagara Chapter has not been scheduled, but it will again be held at Betty’s Restaurant at 8921 Sodom Rd. in Chippawa.
More information can be found at TouretteCanada.ca for the chapter’s page on Facebook.
Visitors will be able to take part in discussions about their experiences and learn about events such at the annual Trek for Tourette that takes place each March.
By Richard Hutton
April 29, 2016
Amanda Juby is the face behind Tourette Canada’s Hamilton Halton Niagara Chapter. Juby, who has been diagnosed with Tourette Syndrome, had been running her own informal support group after her son, Logan, was diagnosed with TS three years ago.
NIAGARA FALLS — Amanda Juby always knew she had Tourette Syndrome, even before she was finally diagnosed in her twenties.
So when her then six-year-old son, Logan, began displaying symptoms, in his case anxiety followed by tics, she again knew. But getting a diagnosis wasn’t easy. She heard it all. Logan was said to be autistic, he had a tic disorder; he had attention deficit disorder.
She finally got the answer she knew all along after switching family doctors and consultations with specialists.
“It seems to be a struggle for quite a lot of parents,” Juby said.
As there is no cure for Tourette Syndrome, neuropsychiatric or brain-based condition, Logan began to be prescribed medication to address symptoms.
That’s because TS isn’t just about tics — both physical and verbal. People who are diagnosed most often suffer from comorbid conditions ranging from anxiety and obsessive compulsive disorder to rage.
“He was on a medication and he began to act strange,” Juby said. “He would have this look on his face that was psychotic and he’d laugh.”
The mother of four wasn’t the only one noticing. His teachers at school also saw the change.
Logan is now off pharmaceuticals and is being treated with CBD (Cannabidiol) oil, a legal compound found in marijuana, and magnesium. Amanda has also worked with his school to develop an Individualized Education Plan (IEP).
“We started something new (for Logan) at the school,” Juby said. “At any time he can take 20 minutes of run time in the gym.”
That allows him to “run out” his tics, Juby said.
Juby, meanwhile, reached out through Facebook to other parents going through the same thing through a group she formed called Niagara Tourette. There she met others and the members would meet informally over coffee at Juby’s home. Seeking more, she contacted Tourette Canada to see if there was help available in the city.
As it turned out there wasn’t any group.
As a result, Juby merged her group with the Hamilton Halton Niagara chapter of Tourette Canada. The group held its first meeting on April 24 at Betty’s Restaurant in Chippawa. The meetings are designed as a means of support for parents, educators and caregivers of children with Tourette Syndrome as well as adults who have been diagnosed.
“There was 15 of us who turned out,” Juby said. “I definitely was not expecting that.”
Among the attendees was someone Juby went to high school with.
“A lot of people didn’t give him a chance in Grade 9,” Juby said. “Like, me, he got a job in construction.”
That’s because Juby is one of the 10 per cent of the people diagnosed with coprolalia
— the swearing tic.
“You really couldn’t have me at the front desk in an office,” Juby said with a laugh.
And that’s the big misconception with TS, she added.
“I think its something that has come from the movies.”
According to Tourette Canada, TS is actually a common medical condition affecting anywhere from 1 to 3.8 per cent of the population, depending on which study is taken into account. While TS affects three to four times as many boys as girls, both boys and girls can have mild or severe symptoms.
The next meeting for Tourette Canada’s Hamilton Halton Niagara Chapter has not been scheduled, but it will again be held at Betty’s Restaurant at 8921 Sodom Rd. in Chippawa.
More information can be found at TouretteCanada.ca for the chapter’s page on Facebook.
Visitors will be able to take part in discussions about their experiences and learn about events such at the annual Trek for Tourette that takes place each March.
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