Northeast Ohio family seeks medical cannabis in Colorado to find effective treatment for seizures

Answer for rare form of epilepsy may be cannabis

CLEVELAND - When Jordan Lyles was six months old, she started having devastating seizures. It took 10 and a half years for multiple specialists in several states to figure out she had Dravet syndrome, a rare type of epilepsy. After powerful prescription drugs failed to control her potentially fatal seizures, her family made a difficult but determined decision to seek treatment with medical cannabis in Colorado, a state where marijuana use of any kind is legal.

Now 18 years old, Jordan has the cognitive level of a first grader. Her mother Paula Lyles said a lifetime of seizures and medication that sometimes did more harm than good have robbed her daughter of a normal life.

"She would have been going to prom, off to college, it has cost a lot. Instead, we play Sesame Street. We like to color, do all the things a 4, 5 or 6 year old would like to do. But in her heart it has cost her nothing because she has such a beautiful, pure heart," said Paula.

The long search for effective seizure control medicine has led the Lyles family to make a radical move: they have split up the family for now so Jordan can have access to medical marijuana. Paula and Jordan are now living in Colorado, going through the steps required to get Jordan CBD - a non-psychoactive cannabinoid in marijuana. It is extracted as oil, does not give a "high" and has shown some promise for treating epilepsy and other conditions. They hope a current initiative to put medical marijuana before Ohio voters in 2014 is successful so they can eventually get that same treatment here and come home.

The Lyles have plenty of company as "medical refugees." Robert Pickering's 4-year-old daughter Eva also has Dravet syndrome. He believes that CBD is the only path to save her.

"There need to be more people willing to speak up and we need to legalize this to save children," he said.

"Not just children, but many people this can benefit. It's enormous. It's a big transition to uproot families and go somewhere else just to get your child treated. It's crazy to me. I mean, if the answer is the answer, then why can't we do that here? Who's going to stop that?"

Many people, who may empathize with the plight of these families, would like to stop it.

Marcie Seidel, the executive director of the Drug Free Action Alliance in Columbus doesn't believe marijuana - either smoked or in raw form - is medicine.

"Medicine goes through a very rigid process of study and research through the FDA, a revered system throughout the world," Seidel said.

DFAA's position is that medical marijuana should meet the same standards as other medicines rather than being pushed as a voter initiative. 

"I've never voted on an antibiotic, or an antihistimine, nor am I qualified to do that. I want to know what research says so (when it's taken) it's the same dose every time. You know the side effects, how it reacts with other medicines, foods. You want the fidelity of it safe and accurate, not just today but in the long term," she added.

CNN's Dr. Sanjay Gupta spent over a year researching medical marijuana, its use here and around the world, and it completely changed the way he thought about cannabis as medicine - which he once opposed. 

"If you look at studies in the U.S., you come to find that the vast majority of studies were designed to find harm with marijuana, so there wasn't a lot of emphasis on trying to find benefits - and show that scientifically," he said in a recent interview.

But he found that in other countries, notably Spain and Israel, they have been doing research with marijuana and epilepsy for quite some time.

"You start to realize this is a medication, one that can work when other drugs don't work. And it can be a lot safer for children who have this intractable epilepsy," Gupta said.

Because Dravet syndrome is rare, there are fewer patients to study. Dr. Gupta featured some of these children in his documentary "Weed." He said he knows of about 100 of these children who have been treated with CBD from cannabis.

"Every child that has tried cannabis after going through meds to treat epilepsy - has had some benefit. Some have had incredible benefit, off all medications. But it's hard to study a substance in the U.S. that is illegal. Those studies are hard to do and that is part of the problem," he said.

Twenty states and the District of Columbia have enacted legislation to make medical marijuana available. More states have legislation pending.

In Ohio, the current petition drive needs 385,000 signatures to get a medical marijuana law on the ballot next year. John Pardee, president of the Ohio Rights Group, said the proposed amendment to the state constitution would establish "the right for users to have therapeutic cannabis, to grow, utilize, sell,

transport and manufacture. It's not something that could be taken away, struck down by a court, usurped or defunded."

As far as putting medical marijuana up to FDA standards for approval?

"Here's the catch 22 on that. The FDA, to qualify cannabis as effective medicine, would require millions in research. But no big pharmaceutical company is going to put money toward that unless they could patent and retain it. No company is going to put millions into researching a plant," Pardee said.

Opponents disagree, and don't like what they see playing out in Colorado and elsewhere. Seidel asserts that "the average person who uses medical marijuana in those states is a 32-year-old white male with no history of chronic illness, but a history of substance abuse."

"We need to go through the right process with the FDA to get people what they need. There is also concern about larger community issues. "We want to make sure our workplaces are safe, people are safe, children succeed in school and that our neighborhoods and highways are safe," Seidel said.

Dr. Gupta, a neurosurgeon, spent 18 months pouring over papers and traveling the world to study medical uses for cannabis.

"There is a lot of evidence there. And it almost becomes a situation where it seems wrong, morally wrong, not to provide and offer medication that can give benefit when nothing else can," he said.

Meanwhile, the Lyles and hundreds of families like them are migrating to Colorado to get treatment without breaking the law. Pickering has established a website, "Heaven's Voice", as a vehicle to help families in transition with information and donations. You can find it here: http://www.HeavensVoice.org

You'll find information about the proposed Ohio law here: http://www.ohiorightsgroup.org

And the Drug Free Action Alliance website can be found here: http://www.drugfreeactionalliance.org

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