- More than 100 families have moved to Colorado for medical marijuana, group says
- A strain known as Charlotte’s Web has reduced seizures in many children, parents say
- “If I had stayed home, I would just be watching her die,” one mother says
- Some families say they’d return home if their states pass medical marijuana laws
(CNN) — They’ve come from as far away as Australia and Canada, or as close as Oklahoma.
They are of different backgrounds and ages, but they’ve all moved to Colorado for the same thing: medical marijuana to treat their sick children.
“Jordan had her first seizure at 6 months old. I had never seen a seizure before,” says her mother, Paula Lyles. “We took her to the hospital. The doctors said that would probably be the only one she’d have and sent us home.”
But when Jordan was 18 months old, the seizures began in earnest.
But she didn’t receive a diagnosis until she was nearly 11. It was Dravet syndrome, a severe form of epilepsy characterized by uncontrolled, continuous seizures. Jordan was put on a combination of three anti-seizure medications.
But “the drugs take her personality away. The side effects of the cure are horrible,” Lyles says. Jordan started having “drop seizures” — which caused her muscles to go limp. Themedicationstook her speech away for two weeks, along with her ability to eat.
“I would rather have her lost to a seizure than watch her stolen away by the side effects of the medicine,” Lyles says.
She’d heard about the healing properties of cannabis, but Lyles lived in Ohio, where medical marijuana is not legal.
Even in the 20 states and the District of Columbia where medical marijuana is legal, the federal government classifies cannabis is a Schedule I drug, meaning it has no accepted medical value and a high potential for abuse. Others in that category: heroin, LSD and ecstasy.
So six months ago, after talking to doctors and reading studies on medical marijuana, Lyles packed up her daughter and moved to Colorado, leaving her engineer husband and 25-year-old daughter Lindsay behind.
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Doing so allowed Jordan to be treated with a strain of medical marijuana that’s high in cannabidiol, or CBD,a chemical in cannabis thought to have medicinal properties, and low in tetrahydrocannabinol, or THC, the psychoactive chemical in pot that gets users high.
Over the last eight months, more than 100 families have moved to Colorado looking for medicine to save their children’s lives, according to the Realm of Caring. The organization is run by the Stanley family — medical marijuana growers and dispensary owners who pioneered a strain of cannabis high in CBD and low in THC.
The strain is called Charlotte’s Web. It’s named after 7-year-old Charlotte Figi of Colorado Springs. Charlotte also has Dravet syndrome; after being on seven medications with no success, she began taking marijuana in an oil form. Her seizures were drastically reduced — from 300 a week to two or three a month.
“I’m 52 years old,” Lyles says. “My whole life is in Ohio, my family, my friends, my church, my doctors. … I had a twinge in my heart because I knew it was the right thing to do, but my other voice is saying, ‘Hey, this is crazy — you’re going to leave this all behind, break up your family and go?’ “
In the end, it’s exactly what she did. She says it’s been hard on her husband and daughter. But Jordan is much happier, and the results, she says, are undeniable.
“We’ve been able to reduce her pharmaceuticals by 50% as a result of using Charlotte’s Web,” Lyles says. “It’s ridiculous. I didn’t want to do it, but now that I’m out here on the other side I know I’m where I’m supposed to be. I wanted to do anything to save Jordan’s life.
“Nobody should be forced with that choice,” she says. “… Now I have hope. There was no hope if I had stayed home. I would just be watching her die.”
About 3 million people in the United States have epilepsy, according to the American Epilepsy Society. Of those, a third have treatment-resistant seizures.
The society supports clinical studies on the effectiveness of cannabis for the treatment of epilepsy.
“We desperately need new treatments, and we need more research to get those treatments,” says Dr. Amy Brooks-Kayal, vice president of the group.
“There are anecdotal reports in some people with epilepsy where marijuana derivatives seem to be effective. There are other cases where it seems not to have worked as well, and what we need to understand is who might benefit from marijuana and marijuana derivatives such as cannabidiol, how much we would give them, how often to give it (and) what the potential side effects might be.”
One parent who knows about side effects is Nicole, 35, who prefers not to use her last name. She and her husband moved to Colorado from Minnesota nearly four years ago when his job transferred him.
Their son was diagnosed with Dravet syndrome just before turning 3. He’d had seizures since he was 11 months old. He would have between 50 and 90 grand mal seizures in a 48-hour period.
“He’s tried several diets, supplements — pretty much you name it, we’ve tried it,” Nicole says. “He’s even tried the medication that’s used in dogs to treat epilepsy, triple bromide. It didn’t work.”
But neither did marijuana. Three times over the course of a year they tried CBD and THCa, a strain of non-psychoactive medical marijuana.
“It never helped his big seizures. In fact, they kept getting worse,” Nicole says. “They were getting worse before we started cannabis, but cannabis did not help them.”
Since they stopped the cannabis more than a year ago, Nicole says her son is doing much better. However, she still supports cannabis as a treatment option.
“I’ve seen firsthand what this has done for other kids, and just because this doesn’t work for my son doesn’t mean that I’m against it,” she says. “Knowing what I know now, I would still try it.”
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