Charlotte’s Web: Treat Epilepsy with Medical Marijuana
At six years old, Charlotte Figi does not look like a typical marijuana user. But before her parents sought out medical marijuana, she didn’t look like much like a normal child either.
Charlotte has a rare form of epilepsy known as Dravet Syndrome. The condition is rare, and its diagnosis stymied her doctors for years. At one year of age, she had been prescribed a regimen of as many as seven medications, including strictly controlled benzodiazepines and barbiturates. When this failed, specialists restricted her diet. The seizures stopped for a while and then continued, so doctors began to search the realm of experimental drugs, suggesting a medication currently being tested on dogs.
Unfortunately, Dravet Syndrome is an intractable disease, which means that it cannot be controlled with medicine. The prescribed diet gave the little girl the longest respite from seizures – about two years – albeit with an increase of other physical and behavioral problems.
At age 6, she was having more than 300 grand mal seizures a week.
Confined to a wheelchair, Charlotte was described by those close to her as catatonic, as she was unable to talk, eat or even swallow. She developed “severe autism-like behaviors of self-injury, stimming [short for self-stimulation, and defined as repetitive body movement], crying, violence, no eye contact, zero sleep, lack of social contact.” Her heart had stopped several times, so her parents had signed a DNR and waited until they would have to say goodbye.
At his wits end, Charlotte’s father, Matt Figi, stumbled across a video online of a young boy with Dravet who treated his condition with cannabis. The hunt was on for the drug, but getting two doctors to sign off on a medical marijuana card proved to be no small feat. “Everyone said no, no, no, no, no, and I kept calling and calling,” her mother Paige said. They finally got their signatures and picked up two ounces, from which a friend then extracted the cannabis oil.
The family gave Charlotte a small dose and surprisingly, she did not have her typical three to four seizures within the first hour afterwards. They thought it must have be a fluke, but after several hours without incident, cautious hope began to emerge. Unfortunately, with such a small quantity of medical marijuana, they faced a supply problem.
Enter the Stanley brothers. One of the largest growers and dispensary owners in the state of Colorado, the two have been called the Robin Hood of marijuana. They make money primarily from medical marijuana patients and donations from those that support the cause. For families like the Figis, “we give (cannabis) away for next to free,” Josh Stanley said. “The state won’t allow us to actually give it away, so we give it away for pennies really.”
Charlotte gets a dose of cannabis oil diluted with olive oil twice daily in her food. She now has two to three seizures a month, almost solely in her sleep. She walks and eats and talks and rides her bicycle and gets to act like a kid, undoubtedly a new experience for her. “Just living a normal life. It’s 100 percent different,” Paige said. “She is clear-headed, focused, has no attention deficit. Charlotte rides horses, skis, paints, dances, hikes. She even has friends for the first time. Her brain is healing. She is healthy. She is happy.”
The Stanley brothers have renamed the strain that they first gave to Charlotte: they now call it Charlotte’s Web.
An Illegal Cure
When the smoke finally cleared, Matt Figi found himself with unanswered questions. “My thought now is, why were we the ones that had to go out and find this cure? This natural cure? How come a doctor didn’t know about this? How come they didn’t make me aware of this?” These and other questions continue to fuel the national discussion surrounding marijuana legalization, regulation, adverse effects and medical benefits.
Dr. Sanjay Gupta, lead medical correspondent for CNN and creator of the documentary “Weed,” which aired this past Sunday, publicly advocates medical marijuana use and legislation to that effect, at least within the realm of medicine. But he wasn’t always so sweet on the vote for the drug.
“I suspect that most of the people eager to vote yes on the new ballot measures aren’t suffering from glaucoma, Alzheimer’s or chemo-induced nausea. Many of them just want to get stoned legally,” said Dr. Gupta in a 2009 article in Time titled “Why I Would Vote No On Pot.” He cited that “deleterious health consequence are associated with [marijuana’s] short- and long-term use, including the possibility of becoming addicted.”
Ever since the days of Reefer Madness, the media has told us that marijuana will make us babbling crazy, giggling stupid, and above all, a nefarious drug addict. Whether the media influenced the scientific community or vice versa, Dr. Gupta presently notes the disparity in perspective when it comes to studies on marijuana. “I calculated about 6% of the current U.S. marijuana studies investigate the benefits of medical marijuana. The rest are designed to investigate harm. That imbalance paints a highly distorted picture.”
Upon reexamining the evidence, and looking to small labs and other countries for less publicized data, Dr. Gupta discovered that the drug is being used to treat, among other ailments, cancer, PTSD, neuropathy, epilepsy and decreased appetite. Often, patients suffering from these or related conditions are tossed a grab bag of prescription medications, which frequently contain heavy, easily abused sedatives and painkillers. Given that a death from a prescription overdose is recorded every 19 minutes in the United States, medical marijuana – which has zero recorded overdoses – may be the safest, if not only, relief for some patients.
Dr. Gupta takes a more reserved stance on recreational use, especially with children. “Young, developing brains are likely more susceptible to harm from marijuana than adult brains. Some recent studies suggest that regular use in teenage years leads to a permanent decrease in IQ. Other research hints at a possible heightened risk of developing psychosis.” However, he looks at other legal “drugs” to qualify his position. “Much in the same way I wouldn’t let my own children drink alcohol, I wouldn’t permit marijuana until they are adults.” Clearly, an understanding of the risks and benefits is imperative when considering the use of any substance.
In terms of medical use, however, adverse side effects are limited depending on choice of strain. Medical breeds are often low in THC, the psychoactive ingredient, and high in cannabidiol (CBD), the chemical that carries the medical benefit without the mind-altering properties. For those who use the drug recreationally, the respiratory harm can be mitigated depending on method of consumption. Those who use oils or foods and ingest marijuana do not put the harmful smoke into their lungs, and vaporizing the buds also helps to release more of the pure THC and related chemicals without the added carcinogens.
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