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When Medical Marijuana Doesn’t Work

Risk Is Worth It continued...

Margaret Gedde, MD, PhD, specializes in medical marijuana referrals and works with Realm of Caring. She says of the first 50 patients, 25% have had dramatic seizure reductions. Another 50% have had “some success.” This may include minor seizure reduction, improved appetite or mental abilities, or being able to wean off other medications.

The remaining 25%, she says, saw no improvement, and in some cases the seizures got worse.

Patients who are sensitive to medications, who have been on medications for a long time, or have liver damage are more likely to not respond to CBDs, she says.

“I’m heartened that, in the looks that I have, the majority of the kids seem to get a benefit, as incomplete as that may be,” she says.

Searching for Answers

There are 275 minors on Colorado’s medical marijuana registry. None of those referrals came from epilepsy specialists. Only a handful of doctors in Colorado are willing to prescribe marijuana, especially for children.

“I base my recommendations on science, and there’s no literature recommending this,” says Kelly Knupp, MD. She's a pediatric epilepsy specialist at Children’s Hospital Colorado. “I had heard the reports. It is not the experience we’re seeing here at Children’s Hospital.”

It’s a sentiment echoed by other epilepsy specialists in Colorado, who believe only 1 in 4 patients is seeing any seizure reduction, based on talks with families who have acknowledged trying the therapy.

“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.”

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