Pubdate: Mon, 11 May 2015
Source: Record, The (Kitchener, CN ON)
Copyright: 2015 Metroland Media Group Ltd.
Contact:  http://www.therecord.com/
Details: http://www.mapinc.org/media/225
Author: Liam Casey
Page: A3

PARENTS ARE TREATING THEIR EPILEPTIC DAUGHTER WITH OIL-BASED MARIJUANA

THORNHILL - Gwenevere Repetski turns three next month and she is
finally able to crawl, a milestone her parents thought they would never see.

She was just an infant when she was diagnosed with epilepsy, a
debilitating neurological disorder that has left her developmentally
delayed.

"She was kind of like a bag of Jell-O," says her mother, Reagan
Repetski.

When she was two, she could hardly roll over when she was placed on
her back, adds her father, Alex.

Sitting in the living room of their Thornhill home, the Repetskis
recall their stressful and emotional journey in search of a treatment
for Gwen.

The first drug she was prescribed - Sabril - only managed to control
her seizures for about a month. The next one was a steroid called
ACTH, which her parents say caused her to gain half her body weight in
three weeks.

Disappointed at the lack of treatment options, Alex investigated
further.

That's when he first read articles about the success some people said
they were having in reducing epileptic seizures with cannabidiol, one
of several active cannabinoids found in the marijuana plant.

Cannabidiol, or CBD, doesn't cause a high and, when mixed with an oil,
has been widely touted as a potential therapy for hard-to-treat forms
of epilepsy. But many doctors say there's little medical evidence yet
to show if the compound is effective or even safe.

Dr. Orrin Devinsky, a researcher at New York University's Langone
Comprehensive Epilepsy Center, has done a safety study on the use of
an extract of cannabidiol.

He looked at the daily seizure logs of 137 patients, most of them
children, who took a drug called Epidiolex - a purified form of CBD -
for three months.

The number of seizures fell by an average of 54 per cent from the
beginning of the study to the end, Devinsky reported in April at an
American Academy of Neurology conference.

"These results are of great interest, especially for the children and
their parents who have been searching for an answer for these
debilitating seizures," Devinsky said. However, he cautioned that
there's no way to tell how much of the seizure reduction was due to
the placebo effect in which the person's condition improves because
they expect the drug to work.

Richard Wennberg, a neurologist at Toronto Western Hospital and a
professor at the University of Toronto, agrees that the placebo effect
is higher in epilepsy trials compared with many other treatment trials.

"I'm open-minded, but hugely skeptical," he says of the supposed
miracle marijuana-based drug for epilepsy, a condition that affects
one in 100 Canadians.

Epilepsy is complicated and sometimes a drug works, he says, but then
it stops and the seizures return. Sometimes the seizures stop
naturally, but come back. Sometimes they stop forever.

People are desperate for an effective treatment and, Wennberg says,
that points to failure in drug development.

Alex Repetski says research and drug approvals take a long time - time
Gwen doesn't have.

Back in mid-2013, encouraged by what he learned during his research,
Repetski tried to convince Gwen's doctors to treat her with marijuana,
but they refused.

He even considered moving to Colorado, where there is limited access
to some cannabidiol-containing products.

While extracting oil from marijuana is illegal in Canada, new
legislation allows the development of the medical marijuana industry.
Under the Marihuana for Medical Purposes Regulations, federal
authorization to possess medicinal pot for patients shifts from Health
Canada to physicians.

After the new law went into effect in March 2014, the Repetskis asked
several doctors to authorize the use of pot for their daughter. One of
them agreed.

There was still one problem: Gwen was a young child and couldn't smoke
or vaporize the pot, so her father learned how to make marijuana oil
in his kitchen. He gives it to his daughter three times a day. She
hasn't had a seizure since, he says.
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