Pubdate: Mon, 14 Sep 2015 Source: Vancouver Sun (CN BC) Copyright: 2015 Postmedia Network Inc. Contact: http://www.canada.com/vancouversun/ Details: http://www.mapinc.org/media/477 Author: Tiffany Crawford Page: A1 POT FOR KIDS SHOWS VALUE FOR SEIZURES, AUTISM Access a problem for parents with research into use of cannabis oil in its infancy Kim Turkington's five-year-old daughter Ella was so heavily medicated for seizures last year, she slept most of the day, her waking hours spent in a deep state of melancholy. "All day long she said, 'I feel sad.' Those were the only words that came out of her mouth," said Turkington, who lives in Surrey with her husband and two children. "She was a depressed fouryear-old and it was terrible." Ella, who has epilepsy and autism, has failed to respond to seven seizure medications. Her parents, desperate to try something new, have done a lot of research about cannabis oil, which contains a low amount of the psychoactive drug THC but significant amounts of cannabidiol or CBD. CBD is believed to reduce seizures. "Since Ella's been on the CBD oil, she's happy. Before she was zombielike and now we find her personality is just so awake," said Turkington, a speaker at State of the Science, Law, and Access to Medical Marijuana: Implications for families with children with autism and epilepsy, held Sunday in Richmond. Kim and her husband Rob Turkington had read about the numerous success stories - stories about children like Summerland toddler Kyla Williams, who went from 200 seizures a day to very few after being treated with cannabis oil. So, working with a neurologist at BC Children's Hospital, Turkington began giving her daughter cannabis oil in May and has since cut back Ella's pharmaceutical dosage. They are only giving her a low dose of CBD oil, but already they have seen an improvement in Ella's health and happiness. "The CBD oil is doing an OK job. She still has seizures multiple times a day. But cognitively she is more alive and that for us is a really big deal," Turkington said. "She sings and dances =C2=85 and we find that she is paying attention more." Sunday's seminar was organized by Project Bearings, an autism advocacy group. Williams's grandmother Elaine Nuessler, an outspoken cannabis oil advocate, was also one of the guest speakers. Nuessler and her family founded medicalcannabisforsickkids.com and all proceeds from the seminar will go to their organization. While Ella still has several seizures a day, Turkington said they are fewer than before the cannabis treatment and less severe. She's gone from having 20 to 25 clusters a day, with five to 25 seizures per cluster, to about four or five clusters, Turkington said. The problem is that CBD oil is not regulated by Health Canada and there have been no clinical trials done in Canada. It can be difficult to find, and various strains can affect patients differently, so knowing how much to give a child is often a question of trial and error. Katie Olsen, a spokeswoman for the Canadian Paediatric Society, said studies about treating kids' seizures with cannabis oil are still so new that medical professionals have yet to reach a consensus on what to recommend to parents who choose to give their children medical marijua na. "We don't have a position at this time, but it will be coming in the near future," Olsen said. "We're looking at all the evidence to make a well informed recommendation." M.J. Milloy, an assistant professor of medicine at the University of B.C., said while there have been case studies that show kids with autism showing some improvement with CBD - for example, exhibiting calmer behaviour - there is not enough evidence that it is a therapeutic option for children with autism. However, he said there is much more evidence to show that cannabinoids may be helpful in treating epileptic seizures, noting a review this month in the New England Journal of Medicine that cites a study of children and young adults taking Epidiolex, a purified cannabis extract with less than 0.10 per cent THC. The preliminary report has shown that among 137 patients who received 12 weeks of treatments, the median reduction in seizures was 54.4 per cent. Turning to the illicit market speaks to the desperation of some parents, and the inability of the medical system to provide access, he said. "You can't think that a system in which parents are turning to drug dealers to get substances for their children is a reflection of the triumph of the medical system." Rielle Capler, a PhD candidate at UBC who has studied medical marijuana access regulations for 15 years, said many parents may fear having their children taken away or losing their jobs if they give them cannabis as medicine. She also said parents are still having trouble finding a health-care practitioner who will work with them to administer and provide the right dosage of CBD oil. - --- MAP posted-by: Matt