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Medical Marijuana: The Last Hope for Sick Children

Desperate for help, families take extraordinary steps to help children wracked with seizures.

Doctors See the Need continued...

"The foundation is very supportive of researching the anecdotal reports that are so shocking and exciting," he says.

He wants to see multiple scientific studies, though, with control groups and placebos, before endorsing marijuana as a seizure treatment. But he acknowledges the difficulty in getting the FDA to support research.

Gedde and Maa co-authored a report in December to the American Epilepsy Society, describing some of the successes. But it was not the sort of rigorous scientific research that is required for FDA approval.

"It's sort of like a popular movement and not scientifically established, so I see where Dr. Maa is coming from," Gedde says.

The FDA recently approved research on a purified form of CBD for children with epilepsy. Orrin Devinksy and Daniel Friedman of NYU's Comprehensive Epilepsy Center, are involved in the research. The doctors wrote an opinion piece in the New York Times that urged the government to remove some of the restrictions around studying marijuana so doctors can better understand its risks and benefits.

"The truth is we lack evidence not only for the efficacy of marijuana, but also for its safety," they wrote. "This concern is especially relevant in children, for whom there is good evidence that marijuana can increase the risk of serious psychiatric disorder and long-term cognitive problems."

The call for rescheduling marijuana has been echoed by the Epilepsy Foundation, a national group, which said, "An end to seizures should not be determined by one's ZIP code." 

Along with federal rescheduling, the organization called for changes to state laws to make epilepsy a condition eligible for medical marijuana and research on multiple types of cannabis and seizures. 

Even if research on marijuana and seizures were approved, it would be years before anything would be available on pharmacy shelves around the country. Gedde knows many families don't have that much time, because seizures can leave children impaired for life. To her, it's worth the risk of not having a proven scientific basis.

"When you look at the risks and benefits for each patient, when you look at a child like Charlotte, whose story does reflect so many other kids ... they can never be normal with this going on. You look at the medical issues of the medications they're on, the sedating, zombie-like effects," Gedde says.

"I do feel confident in my practice, where I can say, 'For you, these are the pros and cons and I feel this is worth doing because nothing else has worked and your child is being damaged daily.' You know the path they're going down so as a physician you do have a comfort level to say, 'Yes, for you, I think you should try this, and I will help you with it.'"

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