A medicine derived from marijuana may help treat children with severe epilepsy. Some parents of children with severe epilepsy say that cannabis helps prevent their children’s seizures, but experts caution that it remains unproven whether using the drug to treat epilepsy is safe or effective.
In one of the new studies, researchers administered the medicine to 261 people with severe epilepsy for three months. The study included children as young as 4 months and adults as old as 41, but most of the patients in the study were children, whose average age was 11. The experimental medicine, called Epidiolex, was added to the participants’ regular anti-epileptic drug treatments.
By the end of the three months, the frequency of seizures in the people in the study was reduced by 45 percent, on average. In 47 percent of the people, the frequency of seizures was reduced by at least 50 percent, and 9 percent of the participants had stopped having seizures by the end of the three months.
The researchers had previously tested the efficacy and safety of the medication for patients with epilepsy, but “the new study significantly extends the number of children and young adults with treatment-resistant epilepsy who received CBD,” said study lead author Dr. Orrin Devinsky, director of the Comprehensive Epilepsy Center at NYU Langone Medical Center.
In another study presented at the same conference, researchers administered Epidiolex to a group of 25 children with epilepsy, for one year. The children were 9 years old on average, and as in the other study, were taking the medicine in addition to their current anti-epilepsy drug regimen.
By the end of the study, 10 kids (40 percent) experienced at least a 50 percent reduction in seizures. One of the seven patients in the study who had a form of epilepsy called Dravet syndrome, which usually does not get better with other treatments, did not have any seizures by the end of the study.
However, 12 of the 25 kids (48 percent) stopped taking the medicine during the course of the study because it did not work for them, and one child stopped taking it because his seizures became more frequent while he was taking it.
What is the Epilepsy Foundation’s position on medical cannabis and CBD?
The Epilepsy Foundation is committed to supporting provider-directed care and to exploring and advocating for all potential treatment options, including medical cannabis and CBD. We support lifting federal barriers to research on cannabis and CBD and support access to these potential therapies, through state-regulated programs, for individuals when other treatment options have failed them. If an individual and their health care team feel that the potential benefits of medical cannabis for uncontrolled epilepsy outweigh the risks, then the individual should have safe, legal access to medical cannabis.
Medical cannabis and/or CBD must be used under the close supervision of your treating physician or prescribing provider. The combination and amount of medications an individual takes to control their seizures is specifically formulated for them depending on a number of factors. While there may be some trial-and-error in finding the right combination of medications that work for you, once a treatment regimen is determined it is critical to continue that regimen as instructed. If an individual unilaterally, without the consultation or supervision of their treating physician, introduces medical cannabis and/or CBD to their treatment plan, they could be at a greater risk of breakthrough seizures, side effects, or other complications.
Most Effective Ways of Using Medical Cannabis to Prevent Seizures
- High-CBD cannabis edibles or extract oil. These can be made at home from high-CBD cannabis, or some patients purchase specialized concentrates/edibles that are high in CBD and low in THC from known sellers (for example “Cheeba Chews”).
- High-CBD strains using a vaporizer (smoking is not the most healthy way to take cannabis). Vaporize your cannabis instead of smoke it, as vaping allows for easier dosing and is less likely to come on too strong too fast.
- Keep taking your prescriptions – Always speak to your doctor before taking any type of new medicine including marijuana, and continue to take all prescription medications. Do not reduce or stop using your prescriptions without talking to your neurologist or you may induce a seizure! Most patients who successfully use cannabis to help control seizures do it in addition to their prescriptions.
- AVOID anything high in THC especially when there’s also low levels of CBD. Avoid concentrates like “wax”, “dabs”, “shatter” and “BHO” (butane hash oil) which are usually extremely high in THC and low in everything else. Also avoid untested edibles, as these are also usually high in THC. Most “recreational” or adult-use cannabis is high in THC, and extremely low in CBD – you need specialized strains for low THC.
- AVOID CBD products made from hemp. I’ve noticed these “legal” alternatives to medical cannabis popping up everywhere, but I haven’t seen any evidence that these are effective for preventing seizures. There’s also questions about whether these unregulated products are safe (or even legal). It is highly recommended to only use CBD derived from medical marijuana, not from industrial hemp.
Please note that CBD will help counteract the psychoactive effects of THC. In addition to preventing seizures, high-CBD strains do not seem to affect most people’s ability to think or function, especially when compared to high-THC cannabis.