It all started with Charlotte Figi. After a bath, the three-month-old seized for a full thirty minutes and was rushed to the emergency room by her terrified parents. Mystified, doctors ordered a full workup on Charlotte, including a spinal tap, MRI and EEG. Doctors were confident that the seizure was an isolated incident, but the terrifying event reoccurred a week later. Fast forward, and Charlotte was diagnosed with Dravet Syndrome, a rare—and crippling—form of epilepsy. Dravet is characterized by largely unpredictable seizures, which can come on at any time. Dravet children typically suffer dozens of seizures a day, and some, like Charlotte, suffer hundreds.
What’s more, Dravet does not respond well to current epilepsy medications. Despite this, by the time Charlotte was walking, she was taking seven daily medications, each with severe side effects. By two years old, her parents say, she had stopped developing cognitively. By the time Charlotte was two and a half, the Figis were told by doctors that they had two options: an experimental drug being developed in France that had only been tested on dogs, and a diet high in fat that would force Charlotte’s body to produce extra ketones. Ketones are produced in the body when fat is broken down.They’ve also been shown to suppress seizures.
The diet reduced the number of seizures, but it came at a cost: Charlotte’s body was starving, her bones were deteriorating, and she was taken ill often. In 2000, The Figis home state, Colorado, passed Amendment 20, which required the state to facilitate the use of marijuana for medical purposes. Seizures were listed as one of the approved reasons for use of medical marijuana in the state, but as of early 2000, the average age of someone in the program was 42. Giving the drug to a child was unthinkable. Until it wasn’t.
By the time Charlotte was having 300 grand mal seizures per week, her heart had already stopped several times. She was slipping away in front of her parents’ eyes. Her father took to the Internet in desperation, and he came across stories of children being successfully treated for Dravet with marijuana. Specifically, the seizures these children suffered were being halted with concentrated CBD oil, a marijuana derivative. CBD, or cannabidiol, is one of the hundreds of chemicals within the plant. At the age of 5, Charlotte was placed in a medically induced coma in an effort to save her life. Doctors informed the Figis that there was nothing they could do for their child.
Dr. Margaret Gedde was the only doctor the Figis could find who would consider medical marijuana for Charlotte. Dr.Gedde was of the opinion that because Charlotte was so close to death, not trying a potentially-viable treatment would be a violation of her oath to “do no harm.” The second doctor to agree was Dr. Alan Shackelford. In time, local growers, the six Stanley brothers, developed a strain that was high in CBD and low in THC. THC is the psychoactive component of marijuana, Charlotte responded to this strain, and for the first time in years, she was free of seizures.
Since then, dozens of children, including Kyla—last name withheld—and Kaitlyn Pogson have been successfully treated with cannabis. In some cases, parents have had to move from anti-medical marijuana states to areas where the drug is legal, at great expense. Part of the problem is that the developing brain is highly sensitive to marijuana, and there is scant research on what long-term effects daily consumption of CBD oil will have.
As far back as 1980, research was being conducted as to the efficacy of CBD in children with seizures. In his paper “Chronic Administration of Cannabidiol in Healthy Volunteers and Epileptic Patients” for the journal Pharmacology, Dr. JM Cunha explains that 4 out of 8 epileptic patients that were given 300 mg of CBD oil were seizure-free for the entire four-month trial. Three patients showed marked improvement, and one patient showed no improvement. Remarkably, little follow-up has been done in the intervening years. Complicating matters is the fact that the US government classifies marijuana as a Schedule 1 substance. Consequently, the government considers the plant to have no medicinal properties. This makes it difficult for government-funded labs and universities to conduct research on the plant.
The Legal Landscape
As of 2014, medical marijuana is legal in 21 states and the District of Columbia. Federally, however, the drug remains illegal, meaning it’s still illegal to take certain quantities across state lines. Of course, this is a major hurdle for parents of children with Dravet syndrome who live in an anti-medical marijuana state. Even in states that have programs in place for the management of medical marijuana, giving CBD oil to a child remains highly controversial. Many states, like Colorado, require parents to obtain two separate prescriptions before they can legally treat their child with the marijuana derivative. One thing is certain: most Americans approve of the legalization of marijuana for recreational use. This shifting attitude could well spur a new generation of researchers to uncover once and for all whether cannabis can provide medications that work safely in the long term. Children like Charlotte, Kyla and Kaitlyn may soon be able to live out their lives seizure-free.