Ryan and Kathy Reed celebrated their son Otis’ third birthday last week, hoping that better days are ahead for him in the family’s new Colorado home.
Otis suffers from uncontrollable epileptic seizures. His body stiffens with them hundreds of times each day.
The Reeds left Kansas for Colorado in early May to gain access to medical marijuana for Otis. He received his first dose of non-psychotropic marijuana extract – known as Charlotte’s Web – on May 8. In the weeks since, steady increases in the dosage have helped Otis to sleep better but haven’t reduced his seizures.
“He’s still having hundreds and hundreds of seizures,” Ryan Reed says. “But the increase in sleep did start fairly soon. You know, after two-and-a-half years of being up every night with him, we know that is definitely a real thing that’s happening. We’re sleeping four to six hours in a row as opposed to two or three.”
The Reeds are among dozens of families from all over the country who have relocated to the Colorado Springs area hoping that medical marijuana will do what other treatments have failed to do: stop the debilitating seizures their children are suffering.
Every seizure that Otis suffers damages his brain, Kathy Reed says.
“When he was 9 weeks old, he was diagnosed with infantile spasms,” she says. “It’s considered a catastrophic childhood epilepsy because of the impact it can have on development if it’s not brought under control.”
Otis has taken more than a dozen drugs in his short life, but none did much if anything to control his seizures. A special diet and the implantation of a vagus nerve stimulator also didn’t work. The Reeds were considering a type of “last resort” surgery to remove or disconnect one hemisphere of Otis’ brain when they heard stories about medical marijuana aiding other children with seizure disorders.
“It’s helping other people have better quality of life. So, we couldn’t put him under the knife without trying this first,” Ryan Reed says.
Kathy Reed is determined not to get her hopes too high. But she acknowledged it’s hard to maintain that resolve when she hears other parents talk about how their children are benefitting.
“There’s a little boy about Otis’ age. He (and his parents) are in an online group of families who are out there, and he recently said ‘momma’ for the first time,” she says. “That’s big. That’s huge. I would love that.”
There may be growing anecdotal evidence that medical marijuana is helping to control seizures in children like Otis. But the scientific evidence produced by a thin body of research does not confirm that, says Dr. Gary Gronseth, a professor of neurology at the University of Kansas Medical Center who recently reviewed the studies done so far.
“We did not find any good studies,” Gronseth says. “So, we’re not saying that it doesn’t work. But we can’t tell from the literature that’s out there whether it works or not.”
Despite the lack of hard evidence, 22 states have adopted laws broadly legalizing medical marijuana. Missouri recently joined a handful of other states that have legalized it only for the treatment of seizure disorders in children.
The issue hasn’t received serious attention from Kansas lawmakers. A medical marijuana bill was introduced during the 2014 session, but legislative leaders declined to schedule a hearing on it despite lobbying from the Reeds and other parents.
“We didn’t have high expectations for getting much done,” Kathy Reed says. “But you know, we told our story and we think maybe a couple of people heard us. But after spending a couple of days in Topeka, we realized that we would be better off focusing our energy on Otis and what needs to be done right now.”
But if the treatments that Otis is getting in Colorado work, Ryan Reed says he’s going to make sure that Kansas lawmakers know about it.
“Yeah, they’ll be hearing from us,” he says.
They also will be hearing from Rep. John Wilson. The Lawrence Democrat says he is going to push his colleagues to at least hold a hearing on the issue in the 2015 session.
“At a minimum, the Reeds and other families that might be in similar situations deserve a fair and open hearing on this,” Wilson says.
But for that to happen, Wilson says, Republican legislative leaders will need a signal from Kansas doctors that they’re open to discussing the issue.
“If we can get the (Kansas) Medical Society to be open to a hearing, that would be a great first step,” he says.
Editor’s Note: This is a follow-up to an article earlier this year about the Reeds’ plan to move to Colorado so they could obtain medical marijuana for their son, Otis.
Jim McLean is executive editor of KHI News Service, an editorially independent reporting program of the Kansas Health Institute.