Several years ago, Robert Carson, a pediatric neurologist at Vanderbilt University specializing in epilepsy, started hearing that some of the parents of his young patients were seeking out a new, unregulated supplement in a desperate attempt to help control their children’s seizures. The supplement was CBD, or cannabidiol, a cannabis-derived compound that is thought by many to have therapeutic medicinal properties—and Dr. Carson was skeptical.
While CBD oil is often promoted as an effective treatment for a whole bevy of medical issues, from insomnia and drug addiction to mental health issues, most of its health claims are as-yet unproven in terms of medical studies. And, because of its tangential association with marijuana, CBD also carries with it a whiff of the illicit, although it contains such low levels of THC that it doesn’t produce a high.
It wasn’t just that these parents were interested in CBD. Some families seemed to think it had the potential to be a wonder drug, and a few were even going so far as moving to Colorado, one of the few places CBD could legally be obtained at the time, to gain access to it. “It was around 2014 when I first recall incidences of patients with drug-resistant epilepsy moving to Colorado to obtain CBD for the treatment,” Dr. Carson said. “I was dubious about the reported benefits and was somewhat taken aback by the fact that families would uproot themselves for this potential therapy.”
Over the next two years, Dr. Carson noticed an upswing of awareness about and interest in CBD among the families in his practice. “Patients and their families were the key driving force for interest in CBD,” he confirmed. “Families heard the stories of near-miraculous benefits of CBD in treating epilepsy and began to ask about it.”
Indeed, this bottom-up trajectory mirrors the arc of CBD in general, which has developed an enthusiastic grassroots following that seems to be leading the way for medical professionals and pharmaceutical companies, rather than the other way around.
Related: CBD and Autism
“I specifically recall one day where I had three patients with CBD-related questions,” Dr. Carson remembered. “One family said they were reading about CBD and wanted more information. A second family reported that the CBD was in the mail and they were starting soon. A third family called to report that they started CBD two weeks earlier and were having side effects.”
It was the third family—the one that had tried CBD and experienced side effects—that really got Dr. Carson’s attention. He and some of his colleagues decided they wanted to get a better understanding of the issue, and they went on to author a retrospective chart-review study to determine the efficacy of “artisanal” (read: non-pharmaceutical) CBD preparations in children with epilepsy.
Epilepsy is a spectrum neurological disorder with multiple causes that is characterized by the presence of seizures, or periodic electrical surges in the brain. These seizures can range from convulsive-type grand mal seizures to “absence” or petit mal seizures. According to the Epilepsy Foundation, around 300,000 American children ages 14 and under suffer from the disorder.
One of the setbacks of treating epilepsy in children is that a large percentage of patients aren’t able to eliminate seizures completely, even with medical treatment. “Overall, one in three patients will continue to have seizures despite multiple medications,” Dr. Carson said. “A big challenge is finding a way to stop the seizures without causing more problems, such as sedation, from the treatments we use to treat the seizures.”
With such limited success controlling seizures with existing medicines, it’s easy to see why some parents were so quick to jump on the CBD bandwagon. For certain children—especially those with the most severe forms of treatment-resistant epilepsy—adding a new medical intervention to the arsenal of options could spell the difference between success and failure when it comes to adequately managing seizures.
Because families dealing with pediatric epilepsy aren’t yet able to legally access pharmaceutical-grade CBD, they must currently use the best CBD oil available from dispensaries and other, non-pharmaceutical manufacturers. There is no guarantee that these “artisanal” preparations are consistent in terms of strength and purity, and this is a challenge both for patients and in terms of studying the efficacy of the CBD being used. “The CBD used by patients was obtained from multiple sources, none of which are regulated by the FDA, so we don’t know exactly how much CBD patients were actually getting,” Dr. Carson explained. “We were simply trying to see if, in our patient population, taking CBD reduced seizures.”
This meant that Dr. Carson and his colleagues weren’t actually dispensing CBD as part of a double-blind study; instead, they reviewed patients’ charts to try and determine what effect CBD had on patients who were choosing to use it in addition to any other therapies their doctors might have prescribed.
The results of the study underscored the mounting consensus that CBD does, indeed, have a therapeutic impact on patients with epilepsy—even when the CBD itself isn’t prepared according to standardized pharmaceutical production protocols. “Our data demonstrated that approximately 40% of patients who added CBD to their treatment regimen responded positively to the medication, meaning, they had a greater than 50% reduction in seizures,” Dr. Carson reported. “Approximately 10% of patients became seizure free after adding CBD. Additionally, approximately 20% of patients were able to decrease the amount of other seizure medications they were on after adding CBD. Few negative side effects were reported, with the most common being sedation. A few patients reported improvements in other features, including being more alert and more verbal.”
Dr. Carson and his team aren’t the only ones interested in CBD’s ability to treat epilepsy. In fact, epilepsy is the condition that has so far garnered the most medical research to back up CBD’s therapeutic claims, culminating in the recent FDA approval of Epidiolex, a forthcoming epilepsy drug that also represents the first time CBD has been approved for medical use by the FDA.
While the issue of inconsistencies among artisanal CBD sources should naturally resolve with the release of Epidiolex, it’s something that epilepsy patients and their families need to be aware of in the meantime. Some patients—especially those who are most sensitive to CBD—may find themselves experiencing noticeably uneven results with artisanally produced CBD products. “If you opt to trial CBD, be open and honest with your child’s physician about your interest in CBD to discuss potential risks and benefits as well as drug-drug interactions,” Dr. Carson advised. He cautions parents to do their research before purchasing CBD products, ideally buying from vendors who include lab-certification of CBD and THC content, as well as the presence of impurities. “It is important to remember that just because something is natural, does not mean that it is safe,” he added.
Despite the uncertainties that come with using artisanal CBD, Dr. Carson’s study bears out its potential effectiveness as a treatment, and with few apparent negative side effects. “One of my patient’s dads summed up CBD in a way that has resonated with me for a few years now,” Dr. Carson reflected. “‘It’s not liquid gold, but my kid is better on it.’”