Kansas family sees benefit of medical cannabis

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.”

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