Epilepsy is one of the most difficult diseases to treat, with approximately one-third of patients having an intractable form of the disease. It’s common for both adults and children with intractable forms of epilepsy to exhaust the use of all traditionally approved pharmaceuticals, with minimal or no effect.
Some children with severe epilepsy have shown incredible results when they were administered a formulation of the marijuana-derived, non-psychoactive cannabidiol or CBD, containing a minimal amount of the psychoactive cannabinoid THC.
The most publicized of these successes was highlighted by CNN’s chief medical correspondent, Sanjay Gupta. In 2013, on his first Weed show on CNN, Gupta, who was previously against the use of marijuana-based medicine, highlighted the successes that five-year-old Charlotte Figi had been administered a CBD-based medicine.
Charlotte suffered from Dravet Syndrome, a rare, severe form of intractable epilepsy. She was 5 when Charlotte’s parents learned that there were no additional conventional options for their daughter’s treatment.
In discussing the quandary that Charlotte’s parents faced, one of the two Colorado doctors who signed off on the use of marijuana-based medicine for Charlotte was Dr. Alan Shackelford, a Harvard-trained physician. At the time, Charlotte was the youngest patient to be approved by the State of Colorado to use medical marijuana. Recalling the Figi’s frustration, Shackelford stated, “... they had exhausted all of her treatment options. There really weren't any steps they could take beyond what they had done. Everything had been tried -- except cannabis."
Recalling her experience in trying to find a cure for her daughter, Charlotte’s mother, Paige Figi stated, "We were pioneering the whole thing; we were guinea pigging Charlotte. This is a federally illegal substance. I was terrified to be honest with you."
After administering the CBD-based formulation to Charlotte, Paige Figi recalled, "When she didn't have those three, four seizures that first hour, that was the first sign. And I thought well, 'Let's go another hour, this has got to be a fluke.' "
Not only did Charlotte’s seizures stopped for another hour, but they also stopped for the following seven days.
The strain that was administered to Charlotte became known as Charlotte’s Web, which was bred by cross-breeding a strain of marijuana with a strain of hemp.
Since then, other low-THC, high-CBD strains of marijuana have been bred, including Ringo’s Gift, ACDC and Haleigh’s Hope.
Patients administering these marijuana-based extracts to their children continue to take a risk. No clinical data exists on either the safety or efficacy of these formulations as an anti-epileptic.
This all changed a few weeks ago when doctors presented the first study designed to determine if CBD-based medicine works. The study results were presented at the December meeting in Philadelphia of the American Epilepsy Society.
The study, which only lasted three months, started in 2014 with 313 children at 16 epilepsy centers throughout the United States. Sixteen percent of the study participants withdrew because the CBD formulation was either ineffective or had adverse side-effects.
But, what was remarkable were the results of the 261 patients who continued taking the CBD-based formulation. The number of convulsive seizures or grand mal seizures decreased on average by about 50 percent. After the study period ended the results were also encouraging, with 13 percent of those suffering from Dravet Syndrome remaining seizure-free, many of whom had never been seizure-free before. 25 of the patients were followed for a year after the study ended, with some doing better and only one doing worse.
These preliminary results should be viewed as only a start. To a great extent, they validate the anecdotal results that Charlotte Figi and other children have had using a CBD-based formulation. These preliminary research results also should silence those skeptics of marijuana-based medicine who have claimed that the results obtained by Charlotte Figi and other patients were a placebo effect.
Even with these preliminary results, there is no likelihood that CBD-based medicine will work for the treatment of many types of epilepsy. Full clinical trials with placebo-controlled elements are a necessity. Randomized clinical trials testing the results of CBD-based formulations for epilepsy are underway, but it may be some time before the results are announced. If the results of these trials are successful, it could still be years before the FDA approves the use of CBD-based medicine for specific forms of epilepsy. Until that happens, don’t expect a medicine being available at Walgreens or Rite Aid.
Until the FDA formally approves the use of CBD-based medicine, desperate parents of children with Dravet Syndrome and other treatment-resistant forms of epilepsy who rightly feel that the medical community has failed them will continue to lack conventional treatment options. They continue to be forced to experiment with CBD formulations that are available in many states that have legalized medical marijuana, but face several unknowns. These include efficacy, safety, and specific dosages for various conditions. The greatest unknown is whether what they’re purchasing from their local dispensary is in fact what they think they’re buying, a dicey proposition at best. They have to rely on what their local budtender is telling them.
Author: Jeffrey Friedland (email@example.com)
Jeffrey Friedland is the author of “Marijuana: The World’s Most Misunderstood Plant,” which is available in print and Kindle editions at Amazon.