Nov 19, 2013 11:30 PM by Maddie Garrett
Some consider it controversial, others call it a miracle drug, but many parents of children with epilepsy simply say, it works. Families are moving to Colorado by the dozens to get a special kind of medical marijuana for their children, and it's only available in Colorado Springs.
One of those families is Rachel and Shawn Selmeski, and their daughter Maggie. She's 17 months old and has constant, uncontrollable seizures. She has more than 500 visible spasms a day, each time it's like a lightning storm across her whole brain.
Because of the seizures, Maggie has lost the ability so smile and roll over. Her doctors in Tennessee told the Selmeski's there was nothing more they could do for Maggie, as the pharmaceutical drugs they were trying to treat the seizures failed to work.
"Basically go home and love your child because she's going to die and she'll probably die pretty soon. That's what we were told," said Shawn Selmeski.
For Shawn and his wife, that answer wouldn't do. So they packed up their lives and made the move to Colorado in search of a new treatment.
"When we look at her body and look at what the medical marijuana is capable of it's kind of a no brainer for us, we have to try and do it," explained mom, Rachel.
The Selmeski's aren't alone, close to a hundred families have moved to Colorado, most living in the Denver and Colorado Springs areas, for the plant.
And it's not your typical marijuana plant. This particular strain has very low THC levels, the pyschoactive component of marijuana, and high in CBD.
CBD stands for cannabidiol, which does not have psychoactive effects but has proven to be highly medicinal.
A family of brothers have developed the cannabis strain and are growing it at their farm in Teller County. The Stanley brothers said once they discovered what CBD could do, they expanded their operation and began perfecting the high CBD plants, called "Charlotte's Web."
"What is really so special about it is that it's high in levels of CBD which is cannabidiol, which is proving to stop the progression of severe and tractable epilepsy in many pediatric patients, so much so that in this point in time we have hundreds of families who have moved to Colorado from other states and from other countries," explained one of the owners, Joel Stanley.
Stanley said they currently have about 200 pediatric patients on the program, with a growing wait list.
At their manufacturing lab in Denver, the Stanley brothers turn this specific marijuana plant into an oil. It's carefully tested by chemists and diluted to exact amounts. This form is specifically made for children; the oil can be measured and put under the tongue or in food for ingestion.
"We constantly try to keep the quality control up, and also we test everything to make sure we're giving the kids the medicine they need," said Jesse Stanley, who manages the lab.
And children are seeing results. Heather Jackson's son, Zaki, has been on this special "Charlotte's Web" oil for over a year. Jackson says her son is living proof that the oil works.
Prior to the oil, Zaki had about 200 visible seizures a day, but that wasn't the worst of it.
"One of the hardest things for him is he would have sub clinical seizures so every ten seconds, he was having a seizure," said Jackson. "He spent almost a decade like that."
But Jackson said within three months of using the oil, he was seizure free and he's remained that way ever since. His development has soared since the seizures ended.
"We're also pharmaceutical free now so his personality is coming out. So what I often say is I finally got to meet Zaki for the first time. And it's true, I had to wait a decade to meet him," said Jackson.
Not all children show such dramatic results though, and doctors are just now starting to study and see results from CBD when it comes to treating children and epilepsy.
Dr. Margaret Gedde, MD, PhD, said it wasn't possible overdose that concerned her, but other medications.
"When you look at the safety profile of cannabis over all, you see that there's literally never been a death from cannabis ever, high THC or not, so that wasn't a concern," she said. "The concerns were just, we didn't know that much, we don't have that much experience with it as far as how it might interact with other medications they have."
Dr. Gedde said she was hesitant at first to prescribe medical marijuana to children. But after research and positive results, she believes this particular form of cannabis, low in THC and high in CBD, is actually safer than some of the heavy drugs many of these children are already taking to treat their seizures.
"One thing people say is, well doesn't the marijuana make the kids high or it has the psychoactivity? And first of all this one doesn't. And the second thing is the kids are already high, they're already having psychoactivity. So whether it be lethargy, being out of it, being sedated on the one hand. The other side of it, a lot of the drugs actually cause aggressive behavior," she explained.
So why does CBD appear to work? Dr. Gedde admits there aren't many studies out there, but scientists do know that the human body creates its own cannabinoids through the endo-cannabinoid system.
"We make our own human cannabinoids that are part of a system that's very important in balancing other systems in our body," explained Dr. Gedde.
She said cannabinoids in the nervous system are "part of a system to calm excessive activity. So seizures are out of control electric activity. They're not normal, they kind of get out of control and they run like a wildfire."
For now, "Charlotte's Web" is only available in Colorado Springs through the Realm of Caring Foundation, started by the Stanley brothers and directed by Jackson. Realm of Caring also helps families pay for the medical marijuana oil.
"I think that's one of the biggest things we provide is not only a community of people who get it, but they're seeking this as therapy too and that's comforting," said Jackson.
The Selmeski's are part of that community and lean on the support of other families who also moved to Colorado for the same reasons.
"It's just natural that they are in the same boat, doing what they can for their children we're doing what we can for our children, there's a whole lot of grace offered in that group," Rachel Selmeski said.
But the trip to Colorado is one way. Once their children are on the marijuana oil, the families can't travel elsewhere legally.
Realm of Caring said out of the hundreds of calls and emails it gets a day, only about one in ten families can actually move to Colorado.
"That breaks my heart, that there's 90% of the people who are inquiring are not going to be able to seek this as treatment," said Jackson. "That's really sad."
The Stanley brothers hope to change that, by encouraging lawmakers to make this form of cannabis legal in other states. They travel across the country with their findings and message, as parents of children with seizures write their legislators in hopes of getting it on the ballot.
"Kids in Colorado aren't any different than kids in Texas or kids in Florida. This isn't about legalizing (marijuana), this is about compassionate use of a very safe plant," Joel Stanley said.
While both the American Medical Association (AMA) and the Epilepsy Foundation endorse the study of cannabis for medical purposes, its use in children is so new the organizations have yet to comment on it.
There are few studies so far on treating epilepsy with CBD. However the Food and Drug Administration (FDA) recently approved a pharmaceutical company to test it, as well as a clinical trial at New York University.
But the FDA is holding off on approval of the marijuana plant itself.
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