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Wyoming parents mull hemp oil for children with epilepsy
By Laura Hancock Casper Star Tribune
Gretchen Wheeler knows her 21-year-old daughter will never be able to drive, marry or have her own children. Katelyn will likely live with her mother "forever," Wheeler says.
She is willing to accept some of those facts. Her daughter has epilepsy and autism.
What Wheeler can't accept is Katelyn's constant seizures.
The Casper mother is one of 175 Wyoming residents, according to Wyoming Department of Health estimates, considering a hemp extract oil that could help people with epilepsy. The Wyoming Legislature passed a law in February that legalized the oil. It was the least contentious of a handful of medical cannabis bills considered by lawmakers.
While the law went into effect Wednesday, the Health Department hasn’t passed rules or issued hemp cards yet.
The oil contains cannabidiol, known by the initials CBD, which many believe can help seizure patients. It contains only trace amounts of tetrahydrocannabinol, or THC, the psychoactive component of cannabis. Hemp and marijuana are different parts of the cannabis plant, according to the U.S. Drug Enforcement Administration.
Wyoming modeled its law after one in Utah, and joins more than a dozen states including Texas, Colorado and Wisconsin that have legalized the oil, said Chris Brown, the press secretary for Americans for Safe Access, a patient advocate group for all forms of medical cannabis.
Advocates for medical marijuana believe the new law is a sign that the Wyoming Legislature’s attitudes are changing about cannabis, although the bill’s sponsor has consistently insisted that’s not the case.
In addition to epilepsy and autism, Katelyn also has attention deficit disorder and developmental delays, which means she functions as a 4 or 5 year old.
Wheeler doesn’t think it’s realistic to expect Katelyn to live a life without seizures. But she hopes they can be a minimal interference.
“I always try do what’s in the best interest of my children,” she said. “That’s my first priority, always. I respect (Katelyn’s neurologist) and the experience he possesses."
About a year ago, a nerve stimulation device was implanted into Katelyn’s chest that can interrupt a seizure by sending impulses to the brain. Overall, it can lower the number of seizures and it has been successful thus far – Katelyn hasn’t had a seizure in months, Wheeler said.
If they return at a high level, Wheeler will take have to talk to the neurologist about the oil. The family is planning a move this fall to Kansas, where a hemp oil bill failed in the 2015 session.
Brown, from Americans for Safe Access, said hemp oil came to the forefront after being featured on a show by CNN’s Dr. Sanjay Gupta. Families have been vocal, he said.
“There’s been a lot of action on it," he said. "Basically, the parents who have the children who are suffering from epilepsy have been amazingly effective advocates. There's no real stopping them is the short answer. They’ve been very effective.”
Dr. David Wheeler of Wyoming Neurologic Associates in Casper is one of just a few neurologists in the state who treat epilepsy. He is Katelyn’s doctor but is not related to Gretchen and Katelyn Wheeler.
Dr. Wheeler said he reluctantly supported the CBD oil legalization, but he opposes medical marijuana, given the current lack of research on it. There haven't been many clinical trials on CBD oil, which Wheeler hopes will change.
"What there is is a lot of anecdotal information about some people with several forms of epilepsy -- which causes many seizures every day and several developmental delays -- who seem to have gotten better when they started ingesting Charlotte's Web hemp oil," he said, referring to a popular brand.
Dr. Wheeler said he reluctantly favored its legalization since patients will use it anyway. Legalizing the oils and monitoring their dosages by a doctor is better than keeping it in the secret and in the dark, he said.
"I think there is a potential pharmaceutical benefit from these, and we should be doing clinical trials," he said.
The neurologist is more concerned about marijuana than hemp. Marijuana comes in many forms, strengths, doses and delivery methods, which haven't undergone rigorous clinical trials.
He said there has been some research indicating marijuana can help with pain or appetite with patients who suffer illnesses such as AIDS or multiple sclerosis. But the medical community also knows marijuana is unsafe to smoke and can lead to lung cancer, COPD and other pulmonary problems, he said.
Anecdotally, many people in the medical community believe people who use too much marijuana can develop acute psychiatric illness, he said.
“We don’t have any medical data," he said. "As a medical practitioner, I do not think it’s appropriate to regularly prescribe or tout agents that have not been proven to be medically beneficial.”
Dr. Wheeler supports the decriminalization and legalization of marijuana for recreational purposes, he said, as long as people don't use it it in the name of science or medicine.
Also pondering the oil is Jody Peck of Dubois, whose 33-year-old daughter, Jennifer, has used every available medicine since she was 10 months old, when she had her first seizure.
Jennifer has had grand mal seizures in which she lost consciousness and had violent muscle contractions. She has also had seizures in which one side of the body is affected, ones that last for seconds and ones that have lasted for minutes.
Jennifer is also Dr. Wheeler's patient.
She takes a combination of four medications that control seizures. The combination currently works well. Sometimes Jennifer can go a week without a seizure, her mother said.
If the current medicine quits working, Peck will ask Dr. Wheeler, who is also her neurologist, to prescribe the oil.
"We will be out of options," she said.
Peck said she first heard about CBD oil by physicians and nurses in the emergency room last year at the Lander hospital. Jennifer was there after a severe seizure. Peck has since learned more.
"I'm not a drug fan by any means," she said. "I don't want them legalizing marijuana whatsoever."
But she would support something like cannabis if it could help people who are sick.
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