By MIKE COURSON
Great Bend Post
GREAT BEND — As the saying goes, choose your battles wisely. But sometimes, it's not a choice at all. Fifteen-year-old Owen Klug was diagnosed with Dravet syndrome, a degenerative form of epilepsy that can cause hundreds of seizures a day. When pharmaceuticals did not work, his parents found hope in hemp oil. With 37 states now offering medical cannabis, and 21 states allowing the drug to be used recreationally, Owen's mother, Kiley, simply wants those same opportunities for her child.
"If you would have told us we would have to go down this road 20 years ago, I would have said nope, no way, never," she said. "But when you love someone, and you do your research, and you're all in as a parent, this was the only path we had available to us. You don't understand it until you have to live it."
Dravet syndrome is chronic and medication-resistant. Many medications actually make the symptoms worse. The Klugs were hoping for a small break during Owen's teenage years, but improvements with seizures have been marginal.
"The teenage years are supposed to be that honeymoon period where they do get better," Kiley said. "I feel like they've gotten better. They have changed a little bit in presentation. Before any kind of therapy, he was having over 250 in an 18-hour period."
Owen has gone through 10 anti-epileptic medicines with little success. He's on a keto, high-fat, low-carb diet to help control seizures. He's had a feeding tube because a well-regulated diet can help with the seizures. And his parents use a vagal nerve stimulator (VNS), which acts like a pacemaker in the brain to shock the brain before the onset of a seizure.
But the best results have come from Haleigh's Hope, a hemp extract containing naturally occurring cannabinoids. By current law, the extract cannot have more than 0.3 percent THC content. The Klugs learned about medical cannabis from a California parent while attending a Dravet conference. Dravet parents have found Haleigh's Hope to be a more effective solution.
"I really feel like these children with Dravet syndrome have been at the forefront, these families, of the medical cannabis revolution," Kiley said. "This movement of, oh my gosh, this stuff actually can help these medical conditions where we've had roadblock after roadblock."
The Klugs eventually weaned Owen off all pharmaceuticals, using only the VNS, keto diet, and Haleigh's Hope. The results have been promising, but as with all drugs, Owen's body has built a tolerance to Haleigh's Hope, and the product has lost some of its healing power.
"He started gaining back these skills," Kiley said. "He started bearing weight again, he started vocalizing, he wasn't asleep all day, he started smiling when his brothers would get in trouble or make funny jokes. He would show meaningful, non-verbal conversation. It was such a gift."
Kiley has returned to teaching full-time, but she spent the first 11 years of Owen's life at home. During that time, she made four trips to Topeka to lobby and educate legislators about the importance of products like Haleigh's Hope, and their impact on patients. She found many conversations with legislators to be less than inspiring.
"Some of the responses I would get were fairly appalling," Kiley said. "I can recall, and this has really stuck with me, one legislator, as he's looking at my son and looking me in the face, he says, 'Well you know, I've got some of that stuff in the ditch behind my house. You're more than welcome to come check that out.' It just breaks my heart that the people who lead our state can't have the empathy to at least refrain from those stereotypical comments in the presence of my son, who struggles day-in, day-out."
The Klugs are not pushing legislation for the recreational use of cannabis. But they do want their son to have access to some of the products now available legally in Colorado and Missouri. Nebraska senators recently held a hearing on a revised medical marijuana bill in that state, and Oklahoma has already passed medical marijuana legislation.
"I think it's time," Kiley said. "We are surrounded by Colorado, Missouri, soon to be Oklahoma. They've had these laws in place for years now, and guess what? Those states are still standing. They're standing, and they're wealthy. Their schools are flourishing.
"We're not going to be a pioneer by any means, but I think we need to follow suit. I think it's time for Kansas to start looking after the people who need it most."