Parents of children with epilepsy know that cannabidiol does an astounding job of reducing their kids’ seizures and symptoms, but most of them literally have to break the law in order to obtain this life-changing treatment.
The liquid derivative of marijuana, nicknamed Charlotte’s Web and Haleigh’s Hope, is a non-psychoactive compound that occurs naturally in cannabis. The substance had previously been shown to possibly mend a brain damaged by alcoholism, but there had been no clinical evidence on the safety and efficacy of the substance as an anti-epileptic. But a new study offers promising results.
In the 3-month study, which started in 2014 with 313 children from 16 different epilepsy centers around the globe, on average, the participants saw a 50% decrease in both grand-mal and tonic-clonic seizures. However, 16% of the participants did withdraw from the study either because the cannabidiol didn’t help or caused adverse side effects.
Dr. Orrin Devinsky, a neurologist at the New York University Langone Medical Center and lead author on the study, said the benefits continued for some of the youngsters even after the trial was stopped.
“In the subsequent periods, which are very encouraging, 9 percent of all patients and 13 percent of those with Dravet Syndrome epilepsy were seizure-free. Many have never been seizure-free before,” he says.
The team followed 25 patients for a year-long study and found that while some of the children continued to improve, one actually got worse. Dr. Maria Roberta Cilio, a pediatric neurologist at UCSF Benioff Children’s Hospital who led that study, said.
“For one particular child, the more the dose of [cannabidiol] was increasing, that increase was paralleled with an increase in seizure frequency,” she said.
Devinsky acknowledged that some of his patients got worse, too, but there’s no way of telling whether it was because of the drug or something else, and it won’t be possible to know until a full clinical trial has been conducted. Scientists need to include more participants and follow them for a longer period of time.
Here is a video outlining how marijuana has been used in recent times for epilepsy.
Researchers also tested the medication on mice to see how it interacted with other epilepsy drugs. They found that cannabidiol and the anti-seizure medication levetiracetam enhanced each other’s effects, but when cannabidiol was given along with clobazam and carbamazepine, they seemed to diminish the beneficial effects of the cannabidiol.
“Once again, we do need a lot more information, and that’s what we hope a large randomized, controlled trial would show, and future studies of what happens in humans, in patients with epilepsy,” Dr. Scott Stevens, an attending neurologist at North Shore-LIJ Health System’s Comprehensive Epilepsy Care Center in Great Neck, New York, who was not involved in the new research, reiterated.
It’s concerning to doctors and scientists that families are taking it upon themselves to treat their children with cannabis, but they often have no choice given the legality of the plant.
According to Devinsky, parents must either purchase the cannabidiol from an artisanal distributor of hemp products or compound the drug themselves, and “the consistency from batch to batch is quite uncertain.”
Julie Fidler is a freelance writer, legal blogger, and the author of Adventures in Holy Matrimony: For Better or the Absolute Worst. She lives in Pennsylvania with her husband and two ridiculously spoiled cats. She occasionally pontificates on her blog.