Photo Credit: Shutterstock.com/ SeDmi
September 5, 2013
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The following is an installment of Doug Fine’s weekly column The Drug Peace Bumblebee:
I was watching this wild-haired kid run around the Colorado statehouse steps in Denver earlier this month (it happened to be the day a hemp flag was hoisted above the capitol there). Wearing the exuberantly gratified smile you expect in your ten-year-old set loose in summer, he was climbing on the cannons, collecting fallen flowers, and all around living the kid-in-the-sunshine good life. I wouldn’t have guessed that from the time that he was four-months-old and until last year, he had been suffering between 50 and several thousand seizures per day. Doctors called his a “catastrophic” version of epilepsy, known as Myoclonic-Astatic Epilepsy of Early Childhood, or DOOSE Syndrome.
Now that her son Zaki, our capitol romper, has been seizure-free for getting on eleven months, that previous period is a little bit easier for Colorado Springs, Colorado mother of two Heather Jackson to talk about. “By the time the fourth conventional drug didn’t work, you have a .8% chance of any other pharmaceutical working,” Jackson told me there on the statehouse steps. “Those are just the facts. I was desperate after the fourth drug failed – that was Felbatol.”
But Jackson, working with Zaki’s neurologist Dr. Brian Grabert and networking with other parents of epileptic children, kept researching options. “By this point, in late 2010, we’d tried plenty of remedies that might be considered alternative, from chiropractics to acupuncture,” she said. “I came to cannabis, with no experience with it, the same way I came to every pharmaceutical and other treatment that we tried: after tons of research. I brought it to Dr. Grabert and we probably discussed it for a year. By the end of 2011 Zaki’s EEG was not looking good. He was in a real valley. He would stop breathing during some of his seizures, which was terrifying. So I showed up at the doctor’s appointment holding our (state cannabis program) application, and told Dr. Grabert that he could sign it or not. He said ‘it’s worth a try.’ Thank God for that.”
Using an orally administered tincture made from a CBD-rich strain called Charlotte’s Web (developed in Colorado by breeders The Stanley Brothers for a young epileptic girl named Charlotte) that she obtained from a dispensary under Colorado’s medical cannabis program, Jackson said, “He had 200 seizures the night before we began his cannabis regimen, and none the next day.”
Imagine if you were that parent. Now imagine if you couldn’t acquire that effective remedy. That’s why Jackson has formed an outreach organization called [Realm of Caring Foundation][Please link to: realofcaringfoundation.org], which she explained as a place for nervous parents of an ill child to make that first call. “People can speak to someone on the phone, ask questions, and get the paperwork rolling if their doctor agrees that cannabis can help, whether it’s epilepsy, cancer or other serious conditions,” she said. “We’ve had ten families relocate to Colorado to have access to this strain just in the last month. That’s amazing to me.” Recent profiles of Zaki’s story in the Washington Post and on CNN didn’t hurt.
Indeed, with wide mainstream recognition of cannabis’ medicinal value in recent months, Jackson said that what’s most frustrating to her is that “our work is limited to Colorado residents. It makes me angry that some parents whose kids could benefit from cannabis, even in Colorado, can’t acquire this strain. There’s already a waiting list.” (CBD, one of 90 known cannabinoids, or components of the cannabis plant, is in particular showing broadly significant medicinal value for conditions ranging from epilepsy to cancer.)