Pubdate: Mon, 11 May 2015
Source: Alberni Valley Times (CN BC)
Copyright: 2015 Glacier Community Media
Contact:  http://www.avtimes.net/
Details: http://www.mapinc.org/media/4043
Author: Liam Casey
Page: 10

PARENTS WANT NEW MARIJUANA TREATMENT MADE LEGAL FOR GIRL

Young Girl's Epilepsy Has Left Her Developmentally Delayed; Oil 
Combats Seizures

THORNHILL, Ont. - 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 years old, she could hardly roll over when she was 
placed on her back, adds her father, Alex.

Sitting in the living room of their Thornhill, Ont., 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 reduced his work 
hours and dove down the research rabbit hole. That's when he first 
read articles online 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.

Devinsky 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 decreased by an average of 54 per cent from 
the beginning of the study to the end, Devinsky reported last month 
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 at the conference.

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.

Similar research by Dr. Kevin Chapman of the University of Colorado 
recently raised similar questions. Chapman checked records of 58 
young patients who used various types of CBD oils and found less than 
a third reported a significant seizure drop. 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 to many other treatment trials.

"I'm open-minded, but hugely skeptical," Wennberg 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.

"It's like playing whack-a-mole," he says.

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

"No more than 50 per cent of people with epilepsy have their seizures 
fully controlled with medications now," he says. "There is a huge 
need for something better."

Alex Repetski says research and drug approvals take a long time -- 
time his daughter 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 his family to 
Colorado, one of 11 U.S. states that allows limited access to some 
cannabidiol-containing products.

One of those products has become known as Charlotte's Web, named 
after a five-year-old wheelchair-bound girl who had an incurable form 
of epilepsy called Dravet Syndrome. Charlotte, whose story has been 
widely reported around the world, had to be fed through a tube while 
suffering 50 seizures a day.

According to reports, her seizures were dramatically reduced after 
she started using oil extracted from a strain of marijuana developed 
by five Colorado brothers, the Stanleys. Several years later, the 
reports say, Charlotte has only one or two seizures a month.

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 vapourize the pot, so her father learned how to 
make marijuana oil in his kitchen. He then sent the oil to a lab for 
testing before giving it to his daughter three times a day.

She hasn't had a seizure since, he says.

"We saw a massive improvement - now she's crawling and feeding 
herself," he says with a broad smile. She even says "mama" and "dada."

Gwen's last electroencephalogram in January showed no epileptic brain 
activity, Alex says.

One of Gwen's doctors is also impressed.

"Since she started, I have seen a remarkable improvement," says the 
doctor who does not want his name published for fear he'll be deluged 
by people requesting prescriptions for pot.

One of the girl's physiotherapists, Bernadette Connor, says she's 
also seen "dramatic improvement" in Gwen's motor development and her 
spatial awareness since the girl started using marijuana oil.

Repetski knows that what he's doing for his child is illegal.

Before going public with his story, he sought advice from his friend, 
criminal lawyer Daniel Brown.

Brown explains that Gwen's doctor signed an exemption allowing the 
girl to take marijuana, but there are strict rules surrounding that exemption.

"As soon as he converts it to a different form, such as oil, the 
exemption no longer applies."

That leaves the Repetskis in possession of marijuana and, since they 
give it to their daughter, they are trafficking it, Brown says.

It's unlikely police would charge Alex Repetski, says Brown, but he 
agrees it's still a risk. If that happens, Brown says he would defend 
his friend in court by arguing the charges are unconstitutional.

A similar case is currently before the Supreme Court of Canada.

Owen Smith, of Victoria, was charged with trafficking for selling 
marijuana oil and cannabis -infused cookies - instead of just dried 
marijuana - to those with medical marijuana exemptions.

A British Columbia Supreme Court judge said the regulations violated 
the Charter of Rights and Freedoms, a decision that was upheld by the 
Court of Appeal. The federal government asked the Supreme Court to 
weigh in, and a decision has yet to come.

A Health Canada spokesman says the processing of marijuana into other 
products, including marijuana oil, falls outside of the scope of the 
Marihuana for Medical Purposes Regulations.

Sean Upton says the regulations simply mean the only thing available 
is dried marijuana.

"In theory, maybe Health Canada could possibly do something about 
somebody busting it down, but I don't think so," Upton said.

"Look, there are a lot of parents who are doing this with nobody 
trying to stop them."

The Repetskis hope the laws will eventually change to allow parents 
with children like Gwen to legally access medical marijuana oil. Alex 
Repetski is such a believer in the treatment that he now works for 
MedReleaf, the company that sells him Gwen's marijuana.
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MAP posted-by: Jay Bergstrom