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Former Kan family still hopeful medical marijuana will help son with epilepsy

The Reed family recently moved from Baldwin City to the Colorado Springs area so their son, Otis, could begin treatment with a form of medical marijuana.-Photo by Trevor Graff

The Reed family recently moved from Baldwin City to the Colorado Springs area so their son, Otis, could begin treatment with a form of medical marijuana.-Photo by Trevor Graff

By Jim McLean
KHI News Service

MANITOU SPRINGS, COLO. — 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 said. “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 said.

“When he was 9 weeks old, he was diagnosed with infantile spasms,” she said. “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 said.

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 said. “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 doesn’t confirm that, said Dr. Gary Gronseth, a professor of neurology at the University of Kansas Medical Center, who recently reviewed the studies done so far.
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 said. “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 said he’s going to make sure that Kansas lawmakers know about it.

“Yeah, they’ll be hearing from us,” he said.

They also will be hearing from Rep. John Wilson. The Lawrence Democrat said 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 said.

But for that to happen, Wilson said, 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 said.

“We did not find any good studies,” Gronseth said. “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.

KSKOLLECTIONSBLACK-FRIDAY
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  • passin_threw

    Rest of the photo caption should read “Ryan has just given Otis a treatment”

    • alexander

      In what way do you think that is even remotely funny?

      • passin_threw

        If you need it explained you won’t understand. Run along my little stalker

        • alexander

          I guess I don’t understand the humor of mocking the appearance of a child with developmental disabilities.

          • passin_threw

            see that’s where you missed the boat. in your disgusting sicko mind you automatically jump at it that someone is talking about the child. figure it out…

          • alexander

            You used the childs name, but weren’t talking about him?

          • passin_threw

            the dads the only one that looks stoned in the picture genius. this is why i knew you wouldn’t understand rocket boy

          • alexander

            I don’t think they smoke out with their child. That’s not how he takes his medicine. Most likely they use edibles.

            And, no, I don’t understand this ‘rocket boy’ you speak of. Tell me more of him?

  • Immortal Illumined

    the greatest plant in the universe is almost free, LET FREEDOM RING! 13

    ENLIGHTENMENT…i was an evil brainwashed, mean, christian conservative until i tried it at 17 years old…i hated gays, immigrants, women’s rights, blacks, marijuana, i was Rush Limbaugh’s #1 fan….until i smoked marijuana….changed the world

    1000s of my friends and family have grown 30-99 plants for 20 years, thanks for keeping prices high and NORCAL wealthy…#1 crop in cali = $15 Billion Untaxed…California, Washington and Colorado thank you for keeping prices high and the $$$ rolling WEST…filling any order in seconds, thanks a billion (dollars)

    “any doctor against marijuana is a doctor of death” – cali secret 420

    from 0 states to half the country(now the majority), from low 20% approval to almost 70%, cali runs this planet by 2 decades, time to tie marijuana to the 2014, 2016 elections, out with the old, in with the new

    20 years behind us southern states and NEW YORK, sad and scary….nobody denies freedoms like the south, nobody…the top ten incarcerators on the planet are southern states and more blacks are in prison then were slaves before the civil war…even if marijuana reforms did pass the republiCANTS in charge would deny you all your freedoms, centuries of practice…no matter though, we never planned on getting your backwards brethren from day one, half the country already but not one southern state, lol…not 1….the new generations are taking over in the south and they are nothing like their freedom denying parents, let’s ride…

    Deaths by Alcohol: Millions
    Deaths by Tobacco: Millions
    Deaths by Prescription Drugs: Quadrupled in last decade
    Deaths by Guns: Millions
    Deaths by the food we are fed: Millions
    Deaths by Marijuana: 0, ever…they are killing my American family while denying freedom

    love and freedom forever, marijuana revolution 2014

    AMERICA’S WAR ON DRUGS IS A WAR ON AMERICANS! 33

    • A_citizen_patriot

      WOW, I love how pot heads always tout that smoking marijuana cant hurt you.

      • Immortal Illumined

        hope you’re enjoying the marijuana revolution in this country this year…DOMINATING

        • A_citizen_patriot

          Oh yeah, nothing better then a bunch of stoned people running around.

          • Immortal Illumined

            as someone who’s traveled this country and seen how backwards the “sober” states are…nothing i love more then coming home to the stoned/ENLIGHTENED state of california,,,,decades ahead of this country, decades

          • A_citizen_patriot

            right……

          • Immortal Illumined

            i know

          • Arthur Doyle

            Your cause suffers with you as a spokesperson. When one is trying to sway the opinion of the masses it is never a good idea to take a nonpartisan issue and interject partisanship.

          • Yahooserious

            Yeah the pro pot people on here are not helping the case. I think it should be legal. Medically and recreationally. Yes, pot can hurt you. If u drive stoned or attempt to study stoned, ect. However, there is nothing in the plant that is “harmful” to the body. In fact out brains through evolution even have receptor sites for THC. Look to Israel for the ground breaking research. There have been 0, yes ZERO deaths related to marijuana through out all recorded medical history. Can’t say that for alcohol; poisoning, drowning in own vomit, falling of a ledge, getting decapitaded under an overpass on a bus in Manhattan, ect, ect.

            People are afraid of what they don’t know. Sad part is we educate our kids that it’s this aweful drug that will ruin your life. Then they try it and realize it’s not any of that. So they jump to conclusions that maybe meth or heroin or cocain must not be bad either. The anti-pot propagandists do more harm than the pro pot propagandists. Sad, really sad.

          • Arthur Doyle

            It is my personal belief that it is time for the decriminalization, legalization, regulation, and taxation of marijuana both medically and recreationally.

          • A_citizen_patriot

            My concern with that is there is such a problem with drunk driving, is it really such a good idea to add more stoned driving to that?

          • Arthur Doyle

            I recognize that you present a valid concern ACP. I concede to have no short, easy answer to assuage you of your concern. It is merely my opinion that the good benefited from the steps previously mentioned would outweigh the negative consequences for such actions.

          • A_citizen_patriot

            Medical marijuana should be legalized. We already use narcotics in other drugs. I don’t see the issue with if being prescribed by a doctor.

          • Chris

            Exactly. Reaction times are decreased, meaning the chance of having an accident increases. Is there a way to so a roadside sobriety test for marijuana? I’m not aware of one.

          • A_citizen_patriot

            No there isn’t right now. I know Colorado law enforcement has been working on one.

          • A_citizen_patriot

            Not completely true. Inhaling particle matter such as smoke into your lungs is harmful. I fine it very hard to believe that there are 0 deaths related to marijuana as stoned driving is related. Now if your inferring that just the properties of weed have never killed anyone I would have to see the research on that.

          • Chris

            I hate that saying “marijuana has never killed anyone.” That’s an asinine statement. That’s like saying a bullet has never killed anyone…it was the massive blood loss that killed them. It’s doublespeak. Marijuana smoke contains more carcinogenic compounds than cigarettes do.

          • Immortal Illumined

            been in the marijuana business 20 years, never killed anyone

          • Chris

            I think the drug has done damage to your pre-frontal cortex. Your statement did not logically follow my statement in any such way.

            When millions of dollars from drug sales are being funneled to drug cartels that murder thousands of people, I think we can attribute that to the drug.

          • Immortal Illumined

            vaporize

          • Immortal Illumined

            thanks for reading it….all i want is 1, getting millions

          • Immortal Illumined

            no it’s not, marijuana is on fire around the globe since i started a year ago…dominating….i already changed my state 20 years ago…i could care less about the rest of you backwards scrubs…we have freedom for decades now

          • Arthur Doyle

            At no point in your rambling, incoherent response were you even close to anything that could be considered a rational thought. Everyone on this forum is now dumber for having read it. I award you no points and may God have mercy on your soul.