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Charlotte’s Story: One Family’s Choice to Fight Dravet Syndrome with Cannabis

Imagine that you are home, getting your beautiful, perfectly healthy 3 month old child out of the bath when out of nowhere their eyes begin to flicker—they’re having a seizure. This nightmarish scenario became a reality for the parents of Charlotte Figi, a little girl who began having seizures at the tender age of 3 months old. At first, doctors didn’t want to call Charlotte’s condition epilepsy & told her parents that she would likely outgrow the seizures. Unfortunately, Charlotte’s seizures didn’t go away…they increased in frequency.

After years of tests and doctors visits, Charlotte was finally diagnosed with Dravet Syndrome; a severe form of childhood-onset epilepsy believed to be caused by a mutation of the SCN1A gene. While the Figi’s were concerned about the diagnoses, they were relieved to finally have a diagnosis: “I remember to this day it was a relief,” Paige said. “Even though it was the worst-case scenario, I felt relief just to know.”

Dravet Syndrome is a particularly difficult form of epilepsy to treat with pharmaceuticals because the seizures are caused by a weakness in the inhibitory neurons in the brain. Most epilepsy medications work by reducing the projection neurons in the brain, but individuals with Dravet Syndrome specifically need their inhibitory neurons strengthened. While attempts have been made by several pharmaceutical companies to develop medications that only work to bolster the strength of inhibitory neurons, they all lacked specificity & were unable to produce positive results in patients. Charlotte Figi’s parents experienced this frustration firsthand, putting Charlotte on medication after medication trying to improve her quality of life to no avail. At one point, Charlotte was suffering upwards of 300 grand mal seizures every week. (That’s over 40 grand mal seizures every single day!) In addition to suffering through these seizures, around this time Charlotte lost the ability to walk, talk and eat. When Charlotte was 5 years old, doctors at the hospital informed Matt & Paige that there was nothing else they could do for their daughter.

With no other options on the table, the Figi’s made the decision to turn to medical cannabis to treat Charlotte—but how were they supposed to go about getting their 5 year old daughter cannabis legally? Finding two doctors that were willing to sign off on Charlotte using medical cannabis was extremely difficult, but eventually Dr. Margaret Gedde and Dr. Alan Shackelford agreed. “(But) they had exhausted all of her treatment options,” Shackelford said. “There really weren’t any steps they could take beyond what they had done. Everything had been tried — except cannabis.” After doing some research online, Matt & Paige decided to purchase a high CBD, low THC flower & have a friend extract the oil for Charlotte. Before giving Charlotte the oil, Paige sent it to be tested at a lab to make sure it was free of any contaminants. They started Charlotte on an extremely low dose of the oil, because at this point there weren’t really any recommendations for dosing for Dravet Syndrome patients—Charlotte had to be a “guinea pig” of sorts, which understandably made her parents uneasy. But the results that Charlotte experienced within the first hour of taking the oil were absolutely remarkable: “When she didn’t have those three, four seizures that first hour, that was the first sign,” Paige recalled. “And I thought well, ‘Let’s go another hour, this has got to be a fluke.’ The seizures stopped for another hour. And for the following seven days.”

To understand how cannabidiol works to treat Dravet Syndrome, we must first examine how the SCN1A gene mutation affects brain functioning: “Studies have determined that this genetic mutation selectively reduces inhibitory signaling in the brain. This is like having a faulty brake pedal as the car speeds downhill; the brain’s excitatory:inhibitory balance shifts towards excitation, and with a faulty brake, seizures occur. Because the brain’s excitatory drive is enhanced, the “signal to noise” decreases; it can no longer distinguish between important signals and faulty ones that only occur because of the amped up excitatory:inhibitory ratio. As a result, cognitive impairment, and sensory integration problems result, contributing to a host of problems from anxiety to autism.” The behavioral deficits that accompany Dravet Syndrome are often just as detrimental as the seizures themselves—children with Dravet Syndrome may struggle socially and with day-to-day tasks such as feeding and cleaning themselves. For awhile it was believed that these behavioral & cognitive deficits were a direct result of the seizures & thus could not be corrected. Dr. Josh Kaplan, a post-doctoral scientist at the University of Washington studying the effects of cannabidiol in a mouse model of Dravet Syndrome posits that instead these deficits are caused primarily by the imbalance between excitation and inhibition in the brain: “Previous work in our lab discovered that amping up the brain’s inhibitory gain with the benzodiazepine Clonazepam rescued the cognitive deficit and autism-like social deficits in Dravet Syndrome mice. These important results indicate that irreversible seizure-induced brain damage is not responsible for these deficits, and thus, could be curbed pharmacologically. Unfortunately, Clonazepam and other benzodiazepines offer only incomplete therapy for Dravet Syndrome, since high doses that cause sedation are required to treat epileptic seizures, but only low doses are effective at rescuing social and cognitive deficits in Dravet Syndrome.” For this reason, it can be nearly impossible to find the right combination of pharmaceuticals that take care of the seizures as well as the cognitive deficits. That’s where cannabidiol comes in. Studies indicate that the GPR55 neuronal receptor can be blocked by cannabidiol, which may increase the impact of the inhibitory neurons—i.e. exactly what pharmaceuticals have failed to do for those with Dravet Syndrome.

With numerous success stories like that of Charlotte Figi, why aren’t more doctors suggesting cannabidiol as a treatment for Dravet Syndrome? First and foremost, these success stories are just that…stories. While anecdotal evidence certainly shouldn’t be swept aside, it’s important to keep in mind that the individuals telling these success stories are the parents of children who are suffering. They more than anyone else want cannabidiol to work for their child and as a result, sometimes they see success where none exists. Like other conditions that medical cannabis has been reported to be effective for, more studies need to be done to scientifically prove just how cannabidiol works to reduce seizures in patients with Dravet Syndrome. When we can combine these anecdotal reports of success with clinical studies that back them up, I believe that will be what causes a shift in the use of cannabidiol for the treatment of Dravet Syndrome. If you or a loved one have questions about the use of cannabidiol for Dravet Syndrome, come speak with one of our Cannabis Consultants today!

(1) Study: Marijuana Reduces Seizures in Kids With Rare Form of Epilepsy
(2) Cannabinoids for pediatric epilepsy? Up in smoke or real science?
(3) Can Cannabis Treat Dravet Syndrome?
(4) Cannabidiol slashes seizures in kids with rare epilepsy, study finds
(5) Marijuana stops child’s severe seizures

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