An upcoming study by researchers at the Lambert Initiative at the University of Sydney will examine the potential efficacy of cannabis-based extracts on treating childhood epilepsy.
Despite medical cannabis being illegal in Australia, the University of Sydney is about to begin a study to examine cannabis’ effects on children with epilepsy.
In partnership with Epilepsy Action Australia, researchers from the Lambert Initiative at the University of Sydney are going to conduct a study that involves two components: Interview families who have been sourcing cannabis illegally to administer to their children with epilepsy and study the content of the cannabis being used for treatment.
“There’s two things we want to do with this study,” researcher and Professor of Psychopharmacology Iain McGregor told the ABC. “One is to understand the experiences of these families what they’re going through. We’re going to take samples of the oils that they’re taking from the cannabis plants, bring them back to the laboratory and do an analysis of what they contain.”
The interviews conducted during the Paediatric Epilepsy Lambert Initiative Cannabinoid Analysis (PELICAN) study will be confidential and parents will have the opportunity to learn the cannabinoid content of the cannabis they’re administering to their children.
McGregor and the other researchers are hoping they’ll gain insight on which cannabinoids are most effective for treating epilepsy.
“The PELICAN Study might… help guide governments if they decide to produce products to help these children,” he said.
“This has the potential to help uncover new and more effective medications for treatment of childhood epilepsy,” said research associate and trial coordinator Anastasia Suraev.
Cannabis contains more than 85 so-far identified cannabinoid compounds. Previous research indicates that cannabidiol (CBD) has anti-seizure effects, with studies showing it can significantly reduce the number and severity of seizures associated with pediatric epilepsies like Lennox-Gastaut and Dravet syndromes. Some children have achieved complete seizure freedom with cannabis treatments.
One of the participating parents in the study is Lorraine Elwell, whose 12-year-old son Hunter was suffering from 30 big seizures a day before cannabis treatments reduced his seizures to four a week.
“Our day-to-day life before medicinal cannabis was hospital – we pretty much lived there,” she said. We’ve spent more accumulative nights in hospital a year than we spent at home for the first eight years of Hunter’s life.”
Most families have been using a trial and error strategy for finding the most effective strains and dosages. “They have so much knowledge about these products, the types of ones to use, what kind of negative side effects or positive effects they may or may not have, how efficacious they are,” said Suraev. “I think the interesting thing that we might find out is how different cannabinoids seem to have different effects for different epilepsy syndromes and different seizures types.”
“We have these amazing informal clinical trials going on in the community, it’s so widely used for such a variety of conditions yet it’s all done unofficially… and there’s very little quality control over the cannabinoid products that are being used,” McGregor said.
According to Professor McGregor, parents have told him of cannabis’s “miraculous effects” on pediatric seizures. Elwell says there was an immediate effect on her son Hunter’s seizures following the first treatment.
“Within 24 hours his seizures had halved, and I honestly thought it was a coincidence,” Elwell said. “I was going, ‘no, it’s just too quick and too easy’. He was still on the same medications, but it seemed the medicinal cannabis had a reaction to all the other drugs and seemed to lower the ad effects.”
“Parents using illegal cannabis-based extracts to treat their children often inhabit a twilight world of incredible stress and uncertainty. All parents want for their child is to live a normal, happy life. Most of them have tried all of the conventional treatment options available for their child before trying cannabis-based extracts,” added Suraev.
The Lambert Initiative is currently seeking children aged 0 to 16 years with epilepsy to participate in the study.