A growing number of local families are heading to Colorado to get a unique medical marijuana treatment for their children who suffer from epilepsy.
Ryan Reed and his wife Kathy felt like they were nearly out of options for their 2-and-half-year-old son Otis who has a catastrophic form of epilepsy. The Baldwin City, Kan., couple takes turns staying up with their son who has more than 100 seizures per day.
"We've tried everything and there was never any sort of reduction in seizures," Kathy said.
Several of the medications caused him to have high blood pressure and more severe seizures.
"I'm scared of more seizures. I'm scared of not doing anything and having seizures just completely take over," Ryan said.
Doctors finally suggested a risky surgery to remove more than half of Otis’ brain. Doctors told the Reed family there was only a 50 percent chance of success. The Reeds felt they needed to try one more option before they said yes to the surgery.
“The options are let’s take out half of his brain which might help or might not or let’s try one more treatment. Let’s try medical marijuana," Ryan said.
Within the last year, Ryan and Kathy looked into “Charlotte’s Web,” a special strain of marijuana that is used to treat children with epilepsy. It is given to patients in the form of oil and studies have shown the cannabinoid or CBD levels can have a calming effect on the brain.
They put Otis’s name on a waiting list at the Realm of Caring Foundation in Colorado. Ryan and Kathy sold their house and moved in with Ryan’s parents for additional support. Ryan quit his job as a teacher to stay home and take care of Otis while Kathy works and provides medical insurance for the family.
In May, Ryan will move to Colorado and join more than 100 “marijuana refugees,” families who have moved to Colorado for medical marijuana.
"I don't think there is any other option. I think that Otis is our purpose. We're going to do everything we can to help him," Kathy said.
But many doctors say there is not enough research to know if “Charlotte’s Web” works.
"I just don't think we know the long-term side effects in children or adults for that matter," Patrick Landazuri said, a neurologist at the University of Kansas Hospital.
The Reeds have been pushing Kansas legislators to legalize marijuana but legislation has seen no movement at that state capitol.
"I think the more you look into it, you see this is helping a lot of people. We need to take it seriously. I know that it can help hundreds of people in Kansas and Missouri if it were legal," Ryan said.
You can follow their journey to Colorado on their blog page for Otis, found here.