Dozens of Edmonton-area families are devastated by big changes in care for their children living with Tourette Syndrome, a neurological condition that causes people who have it to make involuntary sounds and movements.
The Tourette clinic at the Glenrose Rehabilitation Hospital no longer has a psychiatrist on staff, leaving parents searching for alternate care.
“My son needs refill for his prescriptions in six weeks and I don’t even know who to call cause my pediatrician has said, ‘No, I won’t see your son regarding anything neurological,'” Megan Crebas said. She’s been taking her 12-year-old son to the Tourette clinic since 2009.
“It’s a huge support for our village for our Tourette’s village. It’s how we get through day to day and our struggles,” Crebas said.
The clinic has been operating for more than 30 years and is described as a unique clinic in Western Canada. The founding psychiatrist, Alan Carroll, recently retired and the only other doctor at the clinic is on leave.
“When you’re parenting in this way, you feel very alone,” Shauna Lee said. She has three kids diagnosed with Tourette Syndrome and has been going to the clinic since 2008.
“So when you call the clinic and you talk to Deb (the nurse) and talk to other moms, you know their normal is your normal.”
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A voicemail recording Monday said the coordinator and nurse at the clinic, Deb Kryzanowski, was also gone as of Feb 5.
“They keep reassuring us that the clinic is still open, but the clinic has no doctor (psychiatrist) and no nurse,” Lee said.
Parents are being told to bring their children to their family doctor or to the emergency room in an emergency.
“I don’t think they realize that you live in crisis. So the idea that if you’re having a crisis, you should go to the emergency room, we would all just be living there,” Lee said.
Alberta Health Services (AHS) said the clinic is not closed and it’s actively recruiting a new doctor.
“We are recruiting about as actively as we possibility can be and like I said, that does include provincially, nationally and internationally,” AHS addiction and mental health executive director Mark Snaterse said.
“We’re doing whatever we can to find child psychiatrists and try to entice them to come to Alberta.”
“If this was the only pediatric oncologist in Edmonton and they wanted to retire, would there have been more pressure for someone else to step up?” Lee said.
“We struggle with the fact that neurological issues are not the same as physical issues and they’re not valued in the same way.”
Sue Kelly said she found out last week that there would no longer be someone at the clinic she could call during a crisis. She’s been bringing her nine-year-old son to the clinic for the past few years.
“It’s huge. I can’t even comprehend the impact. To not have somebody that I can phone up and say, ‘I need help now’… What do we do?” Kelly said.
“I can’t phone my GP and say, ‘Can you help us?’ Because she can’t help us.”
Snaterse said a couple of child psychiatrists have agreed to work as consultants to help family physicians in the meantime. He said the clinic continues to offer other services such as psychology, psychiatric nursing, mental health therapy and social work support, but acknowledges the main purpose is meant to psychiatry.
“Ours is probably unique in that it’s predominately a psychiatric clinic. In other parts of Western Canada, it might be a combination of psychiatry and children’s neurology,” Snaterse said.
There are about about 200 kids who are patients at the Tourette clinic, according to Snaterse.
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