Desperate for help, families take extraordinary steps to help children wracked with seizures.
By R. Scott Rappold
WebMD Feature
Ezra suffered his first seizure at 3 days old.
He screamed, gyrated, turned purple. The strain on his body and mind left him unresponsive for hours. At 3 months, the seizures began to multiply, 300 to 500 a day.
Doctors pumped him full of medicines, which along with the near-constant seizures left him in a catatonic state, sleeping 21 hours a day. He went 4 months without crying.
"It was like having a little rag doll," recalls his mother, Marisa Kiser.
But as he hear nears his second birthday, Ezra is down to fewer than 10 seizures a day. He is putting on weight. He holds his head up. He cries when he is hungry. He shows preferences for objects and colors. His dozen medications are down to one, and he is being weaned off that.
"He's like a totally different child," says his mother. "He's finally getting an infancy that he never had."
She credits a most unlikely drug: marijuana.
Kiser is among the hundreds of parents who have moved to Colorado in recent months or are planning to move to get access to a special strain of the plant. It is low in THC, the ingredient that gives users a "high," but high in cannabinoids, or CBDs. That's the ingredient that has shown amazing results in reducing seizures with minimal side effects.
They are marijuana refugees, families who have moved hundreds or thousands of miles away from loved ones for a drug that remains illegal for recreational use in 48 states and on the federal level. Their stories have sparked efforts in many states to relax marijuana laws and spurred research into how the drug reduces seizures.
This former teacher from a Southern Baptist family in South Carolina is as surprised as anyone to be here.
"You spend all your time saying, 'Don't do drugs.' Now here I am and some of my students are contacting me and saying, 'You live in Colorado and you give your kid pot?'" Kiser says. "I would never have thought in a million years I'd be in Colorado giving my kid cannabis."
"But it's working, so I'm not complaining one bit."
Meet Charlotte
On a January afternoon at a marijuana farm in a secret location in the Rocky Mountain foothills, Charlotte slumps over her mother's shoulder. Sleepy, yes, but not obviously sick.
It wasn't always this way.
Charlotte suffers from Dravet syndrome, a rare and incurable form of epilepsy that often begins in infancy and can lead to developmental disability and death. By 5, she was wheelchair-bound, fed with a tube, and catatonic from heavy drugs and up to 50 grand mal seizures a day.
Her mother, Paige Figi, was desperate, spending countless hours searching the Internet for some miracle. Two years ago, she thought she may have found it in the report of a father in California who had some success reducing Dravet seizures with marijuana that is high in CBDs. She read how pot growers had increased the THC in plants in recent decades. So why couldn't it be bred to be low in THC but high in CBDs?
source : Moving to Colorado for Medical Marijuana
