Family fighting stigma of medical marijuana use

Benefits of medicial marijuana for seizures
Published: Jan. 31, 2018 at 8:38 PM CST|Updated: Feb. 1, 2018 at 3:00 PM CST
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MISSOURI (KFVS) - Drew and Carrie Gurley began to notice that things weren't right with their daughter Claire about the time she turned one.

"I noticed there was speech delay. But because she was a preemie, even Claire's pediatrician didn't worry about it," recalled Carrie.

But six months later, the speech was still not there and there were those weird twitches.

"I noticed she had these twitches. Her shoulders and head would drop over and over and over again. She would cry when it was over. And then the twitches got bigger."

Seeking answers, the Gurleys spent weeks in hospitals as Claire underwent test after test and endured many doctors hovering over her.

Finally, an answer. Their second born had epilepsy.

Doctors prescribed numerous medications, including steroids.

"The seizures got worse when she was on those meds," said Carrie, "and the side effects were awful."

Not only did the drugs come with a long list of side effects, for Claire, they put her in a haze.

"She wasn't there. Her eyes were empty," said her father Drew.

Carrie and Drew knew this wasn't the life they wanted for their daughter. Because Claire's epilepsy didn't respond to conventional medicines, she was given the diagnosis of "intractable" epilepsy.

This diagnosis opened the door to medical marijuana. Something that Carrie and Drew knew nothing about, but were willing to try.

"Our one-and-a-half year old shouldn't be sleeping all day. We had to try something," said Carrie.

Intractable epilepsy is the lone diagnosis approved for medical marijuana by the state of Missouri. It is not in the form you might think.

Often, when people think of marijuana, they think of smoking the drug. For people with intractable epilepsy, they use what's called Cannabidiol Oil or CBD oil. There are only two places you can get it in St. Louis.

The Gurleys visit Noah's Arc in Chesterfield and purchase a small bottle of the oil. It costs $135. Claire takes seven drops, twice a day.

After six months, the seizures stopped.

"It's been a life changer. We've gone from the worst times to the best times," Carrie said smiling. "We have our daughter back. There's a light in her eyes. She wants to play. There is eye contact. We didn't have that before," remembered Drew.

Brad Rhodes oversees the production of Noah's Arc CBD oil from the field to the finished product.

"People are misinformed," he said. "They think of marijuana and they think of getting high. Our product doesn't have any THC, the psychoactive property in marijuana. Our patients get no 'high' feeling."

Rhodes believes the benefits of medical marijuana, CBD oil, can be extended to other health issues like arthritis, cancer and more.

"It's one of the most versatile compounds we've ever studied."

The Gurleys were spending thousands of dollars a month on medications for Claire, now they spend just more than $100.

While they know CBD oil may not be for everyone, the Gurleys believe that seeing what it did for their daughter, it should be an option for patients other than those with intractable epilepsy.

"There is a stigma surrounding medical marijuana and it's just not fair. It's unfortunate that some kids aren't getting it because of what other people think," said Drew.

As far as those who argue marijuana shouldn't be used, Drew countered, calling that a losing argument.

"We're not talking about THC," he said. "We're talking about CBD oil. It's a losing argument. Those people haven't been on the other side."

Missourians, meanwhile, may see the medical marijuana issue on the November ballot.

A group called, "New Approach Missouri" has already collected 150,000 signatures to put the question on the ballot. They have until May to get the required 170,000 valid signatures.

There is another initiative that may be on the ballot as well that would ask for the approval of not only medical marijuana, but also marijuana for commercial and recreational use.

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