Pubdate: Mon, 05 Dec 2016
Source: Ottawa Citizen (CN ON)
Copyright: 2016 Postmedia Network Inc.
Contact:  http://www.ottawacitizen.com/
Details: http://www.mapinc.org/media/326
Author: Sheryl Ubelacker
Page: C1

POT FOR SEIZURES?

Study set to test oral cannabis treatment in children with rare and
debilitating form of epilepsy that begins in infancy

Researchers at Toronto's TORONTO Hospital for Sick Children are poised
to begin a clinical trial using cannabis extracts to treat children
with severe epilepsy whose seizures can't be controlled with existing
medications.

The trial is believed to be the first in Canada to test an oral
preparation that contains both CBD and THC, compounds in marijuana
that have been shown in the lab and through anecdotal reports to have
anticonvulsant properties in children with treatment-resistant epilepsy.

CBD, or cannabidiol, is one of hundreds of active chemicals in the
marijuana plant, many of them touted to have medicinal properties.
THC, or tetrahydrocannabinol, is the psychoactive ingredient that
produces the "high" associated with pot.

While research has found CBD to be effective in reducing seizures,
there has been no rigorous study that's looked at the combination of
CBD and THC, said pediatric neurologist Dr. Blathnaid McCoy, who will
lead the clinical trial that begins early next year.

But finding a new therapy is critical: despite doctors having an
arsenal of more than 40 anticonvulsant medications, 30 per cent of
their patients with severe epilepsy are unable to get their seizures
under control with any of the drugs.

"There are severe developmental, cognitive, behavioural and motor
delays that happen when children have uncontrolled epilepsy," said
Catherine Jacobson, director of clinical research at Tilray, a
B.C.-based medicinal marijuana producer that will be providing the
oral CBD -THC preparation for the clinical trial.

"It's an absolutely devastating disease to live with," added Jacobson,
whose seven-year-old son has intractable epilepsy. "So the need to
develop new medications that will control seizures in these children
is very high."

The Sick Kids study will enrol 20 children aged one to 18 with Dravet
syndrome, a rare and debilitating form of epilepsy that begins in
infancy. The condition, which is caused by a genetic mutation,
accounts for about one per cent of all cases of epilepsy.

"It varies massively, but (children with) Dravet syndrome often have
multiple seizures every day and they can have quite prolonged
seizures," McCoy said. "And in line with that, they also have a
significant disruption in normal development, so they can have
challenges with their mobility, with feeding difficulty, with
interactions.

Dawn Bellefeuille's youngest son Sean is one of those
children.

He suffered his first seizure at two months old, and they grew worse
and more frequent over time, said Bellefeuille, who has three older
children who aren't affected by the condition.

Sean's seizures, which sometimes number 40 a day, have severely
delayed his development. At 13, he is virtually non-verbal and can't
dress, feed or toilet himself. He attends a special-needs school, but
needs round-the-clock care.

"He's been on umpteen different drugs since he was born," Bellefeuille
said from Ottawa. "He didn't take his first steps until be was four
years old; he didn't sit up on his own until he was 18 months old."

While Sean is still taking a couple of standard anticonvulsant
medications, it wasn't until his parents started giving him a
high-CBD, low-THC cannabis oil that the number of their son's daily
seizures dropped dramatically, allowing him to cognitively advance.

"He said 'Mom' for the first time a year ago," said Bellefeuille,
describing her son as a mischievous imp with a grin that makes "all
your troubles just go away."

Bellefeuille purchases the cannabis oil on prescription from Cannimed,
a licensed medicinal marijuana producer in Saskatoon, for about $600 a
month.

But she said it's trial and error for parents to decide what dose is
safe and most effective for their child because research to guide both
doctors and families hasn't been conducted on CBD -THC combinations.
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