Kokomo Tribune; Kokomo, Indiana

Features

February 25, 2014

Moving for marijuana

Kids with seizures use pot as treatment

(Continued)

"It's the most hope lots of us have ever had," said Holli Brown, whose 9-year-old daughter, Sydni, began speaking in sentences and laughing since moving to Colorado from Kansas City and taking the marijuana strain.

Amy Brooks-Kayal, vice president of the American Epilepsy Society, warned that a few miraculous stories may not mean anything — epileptic seizures come and go for no apparent reason — and scientists do not know what sort of damage Charlotte's Web could be doing to young brains.

"Until we have that information, as physicians, we can't follow our first creed, which is do no harm," she said, suggesting that parents relocate so their children can get treated at one of the nation's 28 top-tier pediatric epilepsy centers rather than move to Colorado.

However, the society urges more study of pot's possibilities. The families using Charlotte's Web, as well as the brothers who grow it, say they want the drug rigorously tested, and their efforts to ensure its purity have won them praise from skeptics like Wolk.

For many, Charlotte's story was something they couldn't ignore.

Charlotte is a twin, but her sister, Chase, doesn't have Dravet's syndrome, which kills kids before they reach adulthood.

In early 2012, it seemed Charlotte would be added to that grim roster. Her vital signs flat-lined three times, leading her parents to begin preparing for her death. They even signed an order for doctors not to take heroic measures to save her life again should she go into cardiac arrest.

Her father, Matt, a former Green Beret who took a job as a contractor working in Afghanistan, started looking online for ways to help his daughter and thought they should give pot a try. But there was a danger: Marijuana's psychoactive ingredient, THC, can trigger seizures.

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