Medical Marijuana for Epilepsy: Charlotte's Story
Many Colorado residents and others around the world have heard of Charlotte Figi, the Colorado child with Dravet Syndrome (a rare and severe form of epilepsy) who was suffering 300 grand mal seizures per week and had been near death several times before finding relief in a low-THC cannabis extract that now bears her name, “Charlotte’s Web.” Charlotte’s harrowing experience with this life-threatening illness and the renewed hope her family has found in medical cannabis has made her a poster child for medical marijuana across the country.
Failure of Conventional Treatment
Charlotte’s seizures began when she was just three months old. She had another a week later, and within a few months, she was experiencing frequent seizures that lasted two to four hours and had to be hospitalized several times. Despite taking several heavy-duty medications, her seizures became for frequent and more intense, and by age 2, Charlotte’s cognitive functioning began to decline. Pharmaceuticals and some dramatic dietary changes provided short-term relief but caused severe side effects and became ineffective over time. The girl’s seizures had become so frequent, intense, and debilitating that when Charlotte was 5, doctors told her parents there was nothing more they could do for her. Her parents put a do not resuscitate order on her file at the hospital and accepted that their child was likely to have a very short life.
After running out of conventional options, Charlotte’s parents decided to try the only thing they had not – medical marijuana. Her father had read about a California child whose Dravet Syndrome was being successfully treated with a low-THC strain of cannabis that is high in cannabidiol (CBD). While very low THC content makes this type of strain virtually useless for getting high (The previous name of Charlotte’s Web was “Hippie’s Disappointment.”), it is believed that CBD, which is not psychoactive, works to quiet the excessive electrochemical activity in the brain that causes seizures. After receiving her first dose of low-THC, CBD-rich cannabis oil, Charlotte’s seizures stopped for a full seven days. Since that time, Charlotte has gone from 300 seizures per week and being unable to walk, talk, or eat to having only 2-3 seizures per month, and she has become able to feed herself, walk on her own, and speak.
The Fight for Better Research and Wider Access
Although Charlotte Figi’s case is notable, it is not unique. There are now approximately 250 children with Colorado medical marijuana cards for treatment of Dravet Syndrome, and many more around the country are either receiving or attempting to obtain similar medicine in their own states. Observational studies, such as the one conducted by Dr. Edward Maa of the CU college of medicine, suggest that extracts from strains like Charlotte’s Web may provide profound benefits for many patients struggling with epilepsy. The Children’s Hospital in Aurora is beginning its own 3-year study of 150 epileptic patients who currently use cannabis to treat their symptoms. Because the DEA still lists marijuana as a Schedule I drug (one with high potential for abuse and no medical benefit), however, the ways in which U.S. scientists are allowed to study its effects are severely limited. As a result, several groups, including the American Academy of Pediatrics and the American Epilepsy Society, are advocating for the reclassification of marijuana to allow for controlled studies of its medical applications. Bills currently before Congress that would change marijuana’s classification include H.R. 5226: Charlotte's Web Medical Hemp Act of 2014, which would completely exclude very low-THC preparations from the Controlled Substances Act, as well as at least two other bills (H.R. 689 and 4498) that aim to reschedule marijuana and prevent the federal government from criminalizing marijuana-related activity that is permitted under state law.
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