Is This Lennox-Gastaut Treatment Legal? Do You Care?

People with treatment-resistant epilepsy (TRE)—and especially parents of children with the severe form of epilepsy called Lennox-Gastaut syndrome—can easily become discouraged as they speed through a growing list of anti-seizure meds with no effect.

Doctors often add one, then another, then another anti-seizure medication. Blood levels can easily and quickly reach toxic levels, and the long-term health effects of being on so many meds becomes a grave concern.

And, almost without fail, someone somewhere down the line will ask, “Have you tried weed?”

Desperate parents of children with severe epilepsy may be open to trying medical cannabis treatment, but soon find that many doctors won’t consider it. That can leave parents on their own, desperate to find something that will help their babies stop seizing.

Parents usually will purchase it from an artisanal distributor and some even compound the drug themselves, leaving doctors worried about quality and consistency, and even more worried that parents are just going off and trying things.

weed 420 marijuana pot cannabis
And those are not the kind of lessons you usually get on Sesame Street… Source: Giphy

Doctors want data, and now they are starting to get it. Researchers are studying an active compound in marijuana which may help Lennox-Gastaut children combat their severe epilepsy. The studies center around a medicine called Epidiolex.

Not Blowing Smoke

Here’s a quick tutorial on medical marijuana as it relates to this study:

There are over 400 chemicals in marijuana, but only about 80 of them are unique to the Cannabis plant—these are called cannabinoids. One of them, delta-9-tetrahydrocannabinol (THC), is  the component mostly responsible for marijuana’s mind-altering effect. Simply put, its “high.” THC has been studied as a potential way to treat the nausea and vomiting associated with a number of medical conditions.

Scientists have recently been focusing on another component, cannabidiol (CBD), that appears to have some of the medically helpful properties of THC, but with less psychoactive effects. Specifically, they’ve been studying cannabidiol in a liquid, purified formulation created by the UK-based company GW Pharmaceuticals.

Two new small research studies followed children for three months and one year. Researchers added Epidiolex to the regular anti-epileptic drugs the patients were already taking. The new drug greatly reduced the frequency of seizures and in some cases, patients completely stopped having seizures.

Some patients did stop taking the medication at on point or another in the study because they said it didn’t work. A small group of people (about 5%) experienced changes in their liver enzymes and diarrhea as side effects, which are relatively minor in comparison.

Studies have been done before in adults, but these more recent studies focused on children, which is very promising for patients with TRE.

While the studies are a good start, future research should involve control groups that take a placebo instead of CBD, and need to include a larger number of subjects. A double-blind study would be an improvement, since in the two studies in this article both the researchers and patients knew that all patients were getting the drug.

Such studies are currently underway, and one large controlled study just concluded; it involved 313 children and began in 2014. Patients were given CBD over a three month trial. The med didn’t work on 15%, but the other 85% of the patients saw marked improvements in the reduction of grand mal and tonic-clonic seizures.

And some kids still saw benefits after the trial had ended! More research studies and clinical trials are ongoing in the U.S. and other countries, but so far the future looks promising!

If you’re interested in reading more about the clinical trial/research and how CBD sometimes plays out in real life, click on this story.

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