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When Medical Marijuana Doesn’t Work

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“We don’t feel like right now we have the information to know if it’s going to be effective and what the safety profile is, so we cannot encourage families to make that choice, and we try to educate them about our concerns,” says Amy Brooks-Kayal, MD. She's a University of Colorado epilepsy specialist and vice president of the American Epilepsy Society.

Doctors are also hampered by the reluctance of parents to reveal they gave their kids marijuana, and the fact that if children are having success, their parents might not visit an epilepsy expert at all.

Brooks-Kayal, along with many other epilepsy specialists, would like to see the federal government remove some of the red tape that hinders marijuana research.

She is also concerned about the impact of marijuana on kids’ developing brains.

Denver’s Edward Maa, MD, shares the skepticism of other epilepsy specialists. But he sees enough promise in CBDs that he is working with the Realm of Caring to try to answer the big question of why it works for some children and not others.

In an upcoming study, patients on Charlotte’s Web will be asked to provide a saliva sample, which will be genetically analyzed by a private lab. Maa hopes it will reveal genetic reasons why some patients respond to CBDs.

He understands why parents are willing to try CBDs, despite the lack of scientific data.

“These syndromes these kids have, and frankly many adults that I treat have, [they're] so devastating, so why not?” he says. “If it weren’t a byproduct of marijuana, I don’t think anybody would be having any consternation at all.”

No Regrets

Dana, Edward’s mother, took him off Charlotte’s Web in March after levels of the anti-seizure medicine Depakote in his bloodstream spiked. Doctors believed it was interacting with the marijuana.

He still has absence seizures, though they are steady at about a dozen, down from a high of 60 to 70. He is able to live a “pretty normal life,” she says.

She knew going in that the marijuana treatment was untested, but she was “cautiously optimistic.”

“I have absolutely no regrets at all. I feel like Charlotte’s Web, whether it works or doesn’t work, has put epilepsy back out of in front of the public, and I think it’s a great thing people are talking about it.”

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