Saundra Young of CNN.com delved into the heated debate of medical marijuana and children, in her story about a little girl who has a rare, and severe form of epilepsy called Dravet Syndrome. While the debate continues, the pro-legalization side may have won a small victory in the form of Charlotte Figi, 6, who was given her life back by marijuana.
Charlotte was just 3 months old when she had her first seizure. Her father was changing her diaper when her eyelids started to flicker uncontrollably. Her parents, Matt and Paige, rushed her to the hospital, the seizure lasted about 30 minutes. According to Young, while at the hospital, Charlotte got the full work up, but doctors found nothing abnormal and sent her home.
The following week Charlotte had another relapse, and for months her seizures gained in frequency, some lasting up to four hours. Charlotte was put on medications and they'd work for a while, but nothing was infallible, the seizures always came back.
At two, Charlotte started to decline cognitively and, according to Young, six months later a neurologist at Children's Hospital Colorado "tested her for the SCN1A gene mutation which is common in 80 percent of Dravet Syndrome cases." After two months, the test came back positive.
Dravet Syndrome, also known as myoclonic epilepsy of infancy is a rare, severe form of intractable epilepsy. Intractable means the seizures are not controlled by medication. The first seizures with Dravet Syndrome usually start before the age of 1. In the second year, other seizures take hold: myoclonus, or involuntary, muscle spasms and status epilepticus, seizures that last more than 30 minutes or come in clusters, one after the other.
Running out of options, doctors put Charlotte on a ketogenic diet that is frequently used to treat epilepsy. The diet helped but had a lot of side effects. Young reported, "Charlotte suffered from bone loss, her immune system plummeted, and new behavioral problems started popping up." Two years later, the seizures came back and by three, Charlotte was having up to 300 grand mal seizures a week. She had lost the ability to walk, talk and eat.
Desperate for a treatment, Charlotte's father Matt searched the Internet and eventually found a boy with a similar case in which medical marijuana helped his seizures. The Figi's turned to the Stanley brothers, one of Colorado's largest marijuana growers and dispensary owners, for help.
"These six brothers were crossbreeding a strain of marijuana low in THC, the compound in marijuana that's psychoactive, and high in CBD, which has medicinal properties but no psychoactivity," writes Young. But the Stanley brothers didn't know what to do with this particular strain, as no one seemed to want to buy it. Then they met Charlotte.
The first time Charlotte tried a small dose of cannabis oil, the results were astounding:
"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 Stanley brothers started the Realm of Caring Foundation, a nonprofit organization that provides this particular strain of medical marijuana to adults and children suffering from a host of diseases. The strain used by Charlotte and 41 other patients is affectionately called Charlotte's Web.
Charlotte's seizures stopped for seven days after her first dose and today she is eating, and walking on her own — even riding a bike, her parents say. Charlotte gets a dose of the cannabis oil twice a day in her food and her seizures are down to 2 to 3 per month.
"I literally see Charlotte's brain making connections that haven't been made in years," Matt said. "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?"
Read the full article on CNN.com.