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. - --- MAP posted-by: Matt