VANCOUVER — 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. And it’s meds. She was a depressed four year old and it was terrible,” said Turkington, who lives in Surrey with her husband and two children.
Ella, who has epilepsy and autism, has failed to respond to seven different types of seizure medication.
Her parents were desperate to try something new, and had been doing a lot of research about cannabis oil, which contains a low amount of THC and high amounts of cannabidiol (CBD), the component 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, who will speak at a cannabis and kids seminar in Richmond on Sunday afternoon.
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 the little girl’s health.
“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,” said Turkington.
The best part is seeking their little girl happy, she said.
“She sings and dances … and we find that she is paying attention more.”
Sunday’s seminar, called State of the Science, Law, and Access to Medical Marijuana: Implications for families with children with autism and epilepsy is being held at the Cambie Community Centre and is organized by Project Bearings, an autism advocacy group. Williams’ grandmother Elaine Nuessler, an outspoken advocate for cannabis oil, will also be 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 multiple 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 (five to 25 seizures per cluster) to about four or five clusters, said Turkington.
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 access, and various strains can affect patients differently, so knowing how much to give a child is often by 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, and medical professionals have yet to reach a consensus on what to recommend to parents who choose to give their children medical marijuana.
“We don’t have a position at this time, but it will be coming in the near future,” said Olsen. “We’re looking at all the evidence to make a well-informed recommendation.”
B.C.’s medical health director Dr. Perry Kendall was unavailable for an interview on the topic, and the Provincial Health Services Authority also declined to comment for reasons similar to the Canadian Paediatric Society.
M-J Milloy, an assistant professor of medicine at UBC, 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 an open-label 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.
A seminar to help parents wrestle with those issues is invaluable, she said.