Pubdate: Mon, 19 Sep 2016 Source: Province, The (CN BC) Copyright: 2016 Postmedia Network Inc. Contact: http://www.theprovince.com/ Details: http://www.mapinc.org/media/476 Author: Denise Ryan Page: 3 PARENTS BECOME ACCIDENTAL POT ADVOCATES CANNABIS EXPO: Three families say medical marijuana proved the only effective medication for their children When Mandy McKnight's 10-year-old daughter got her first "drug talk" in school last year, the teacher asked if any kids in the Ottawa-area Grade 6 class had ever seen any drugs. McKnight said her daughter's hand shot up. She told her teacher she had seen drugs, McKnight said - pharmaceutical drugs. Her daughter explained to the class that she'd also seen cannabis, but that she didn't see cannabis as a drug. It was a medicine, one that helped her little brother Liam, who suffered from epilepsy. That a 10-year-old was the one to lead an educational talk on medicinal marijuana in her Grade 6 classroom is a point of pride to McKnight, but also a source of frustration. McKnight was one of three parents of kids helped by medicinal marijuana who took the stage at the LIFT Cannabis Expo in Vancouver on Sunday to advocate for wider education among the public and physicians, deeper research, and greater funding. Cannabis was a last resort for McKnight's family. Liam, now eight, suffers from Dravet syndrome, a rare form of epilepsy. He had up to 80 grand mal seizures a day, despite being on multiple conventional medications and a special diet. Although cannabis oil hasn't cured Liam, it has enabled him to experience up to 10 seizure-free days at a time. "Liam is not in the hospital any more for two weeks at a time, taking up a hospital bed," McKnight said. Before switching from pharmaceutical drugs to cannabis oil, McKnight said the family was calling an ambulance for Liam as often as twice a week. McKnight said the improvement they've seen in Liam since starting with cannabis oil has been "a miracle." "What's happening on the ground and with parents drives the science," panel host Hilary Black said. Parents, "without a lot of guidance, without a lot of support, learning how to apply cannabinoid therapy to really complicated cases." Alexander Repetski of Toronto, another parent and "accidental advocate," said his four-year-old daughter Gwen was diagnosed with a severe, intractable form of epilepsy at just three months old. They tried at least 10 drugs, including steroids, before deciding to try medical marijuana oil. "The steroids she was put on cost $22,000," Repetski said. "And they didn't work." Repetski says he has spent $5,000 to $6,000 on equipment to extract the cannabinoids from the dried marijuana he purchases for Gwen's use. Since using cannabis extracts, Gwen hasn't had a seizure in 20 months, he said. Montreal mom Kunval Hanif also shared the story of her son Zen, who suffered brain damage due to hypoxia, a lack of oxygen during birth. He has cerebral palsy, a seizure disorder that caused up to 200 seizures a day, and is blind due to damage to his optic nerve. After trying 21 medications and the ketogenic diet without success, Hanif asked her neurologist about cannabis. "He said 'that's the door,'" Hanif said. Desperate, she took her son to Los Angeles, where she was able to connect with other parents to try cannabis oil. "I will never forget that day," she said. "It was eight o'clock at night. I gave him the first dosage. I did not know how much I should give him. I just sat there the whole night watching him and he had not a single seizure." Hanif, McKnight and Repetski argued that as Canada moves forward with the legalization of recreational marijuana, the spotlight should also be on medicinal use, greater education for doctors, and funding for families where conventional medications have failed. - --- MAP posted-by: Matt