While most little six-year-old girls are busy planning tea parties with their mom, and learning how to braid their hair – Colorado Springs resident, Charlotte Figi has a slightly more challenging set of obstacles to overcome. Charlotte suffers from a rare, yet debilitating form of severe pediatric epilepsy, known as Darvet syndrome. Suffering approximately 60 life-threatening seizures a day, and over 200 per week, Charlotte’s mom Paige had come to the end of the pharmaceutical road. Pill after pill, Dr. after Dr., Western medicines anti-epileptic pharmaceuticals had failed Charlie [as her mother calls her] miserably.
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Charlotte’s parents, Paige and Matt Figi, said the daily seizures made it impossible for Charlotte to have any kind of normal existence. The family had tried a number of remedies, like a special diet and dozens of prescribed medications, to combat the seizures. But each treatment exhibited negative side effects.
While the diet appeared to ameliorate the seizures at first, the strict food restrictions prompted bone loss, plunging Charlotte into a preliminary stage of osteoporosis. She also suffered from respiratory, ear and bladder infections. The drugs put stress on her organs and some of the medications caused her to stop breathing.
Paige and Matt said they had reached a stage of desperation. When the suggestion came to try a less conventional approach to their daughter’s disease, both were willing to overlook the controversial implications of a 6-year-old using medicinal marijuana.
Because little research on medicinal marijuana usage for children existed at the time, finding doctors to treat Charlotte presented a challenge. But Paige persisted. Eventually, she found two doctors, Dr. Margaret Gedde and Dr. Alan Shackelford, to sign for a medicinal marijuana license and treat Charlotte.
Shackelford told The Gazette the Figis had exhausted all other options. While he understood there were risks involved with treating Charlotte, he said “In her case, it seemed worth a try.”
Charlotte was prescribed and still takes a strain of marijuana specially breed for pediatric patients. Now named “Charlotte’s Web” to acknowledge the success of its first patient, the strain is low in THC, the ingredient that gets people high, but contents high amounts of cannabidiol (CBD), which attributes to the medical properties of pot.
Charlotte doesn’t smoke the marijuana. Rather, her mother administers it to her twice a day, using a syringe to squirt the prescribed amount under her tongue.
“In six years, this is the only thing that has given us this type of success with no side effects,” Paige told The Gazette.
Charlotte no longer takes medication and hasn’t displayed any negative side effects from the medicinal marijuana. While there may be little research on the long-term effects of Charlotte’s medicinal marijuana usage, the Figis are just happy to see their daughter functioning, let alone living a life somewhat akin to a normal 6-year-old.
They would like to spread the word of medicinal marijuana’s effectiveness to other parents of children with Dravet Syndrome or similar diseases. Yet, with federal drug laws restricting access to it and the government not providing support for clinical studies, further research through FDA-approved trials does not exist.
Despite these setbacks, the Figis continue to advocate medicinal marijuana because it has reinstated some semblance of normalcy to their lives.
In addition to controlling Charlotte’s seizures, there have been numerous additional health benefits realized, thanks to her parent’s bold use… and faith in high CBD medicinal cannabis. She now enjoys an increased desire for food, restful sleep periods, and a reduction in her autism like symptoms: traditionally leading to self injury, violence and a life of exasperated suffering for the family.