Epilepsy's refugees: 'This was our only hope'

Posted: Published on October 13th, 2014

This post was added by Dr Simmons

STORY HIGHLIGHTS

(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. The medications took 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.

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Epilepsy's refugees: 'This was our only hope'

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