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 building 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, 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.)
Though before her introduction to cannabis as medicine, Jackson would describe her politics as somewhat conservative, she’s now a passionate activist for the plant (that’s why she and her family were at today’s hemp flag hoisting). “It’s not about politics. It’s about my son’s health.”
We live in an official medical world with very specific procedures, and the stunning results that have given Zaki a quality of life few would’ve imagined possible and have transformed his mother from suburban mom to cannabis-proselytizer would be judged in that world as “anecdotal.” To address this, Dr. Orrin Devinsky, Director of the Comprehensive Epilepsy Center at NYU’s Langone Medical Center, will this year be doing an FDA-approved clinical trail on botanically derived CBD strain – thought to be one of the keys to what’s so effective about Charlotte’s Web. The double blind study will follow 25 child pediatric patients. 70 families applied to take part.
Devinsky told me by phone that although he considers the jury out cannabis’ effectiveness for epilepsy (“plenty of anecdotally promising approaches have proven to be dead ends, and we have almost no data yet,”) he also “could have studied plenty of other things. I wouldn’t be devoting my time to this study if I didn’t think it had promise.”
Then our conversation kind of wrapped up quickly, when he shared that GW Pharmaceuticals, the British-based and Bayer-funded cannabis company, is partly funding the study, and I shared that I had recently written a column about why I had declined to invest in GW Pharmaceuticals, at least at the start (the reason is that I must first feel assured that Americans will always be allowed to cultivate and acquire their own whole plant cannabis, regardless of medical patents). Devinsky told the Toronto Star on August 17 that he could see federal approval in two or three years if the study confirms the anecdotal evidence.
For her part, Jackson said of mainstream medicine’s willingness to test and eventually embrace the cannabis plant, “I think (the NYU study) is a good thing because today I have to look a family in the face and tell them the effective strain isn’t available. “But with a lot of experience I can say the pharmaceutical model scares the hell out of me. Overall I’m excited. This study will be using real plant sources at least.”
Jackson said that Zaki’s application received immediate approval and complete support from the state’s cannabis program deciders, she thinks because Grabert, a respected neurologist, was on board with the treatment.
“He isn’t a cannabis doctor,” she said, pausing to call the still frolicking Zaki back from a tree that seemed a bit too far away. “There are 46 pediatric cannabis patients in Colorado right now, and 23 are using the Charlotte’s Web strain. Some parents have had problems getting approval. And I shudder when I think of parents from non-cannabis states who can’t get this effective medication for their epileptic children. Luckily, views about medical cannabis both inside and outside the medical community are changing very quickly and I think any stigma will soon be gone.”
Jackson, having gone through a ten-year journey to find effective medication for a son who had been suffering every hour of every day (“he could hardly sleep,” she said), doesn’t pretend that one remedy will work for everyone (young or old), or suggest that every epileptic immediately medicate with cannabis. Even Zaki required a three month-long dose adjustment period following his immediate improvement when medicating with cannabis before his seizures completely went away.
But the questions the 37-year-old Jackson gets asked by casual observers who learn about Zaki’s treatment sometimes miss the point, she said. “People sometimes wonder if Zaki gets high, and I say, ‘well, first thing to know is that his head is no longer bloated to twice its size from steroid treatments, you should know that. And he no longer rocks in agony during seizures for much of his life. By the time he was five-years-old, I’d documented 50,000 of them, sometimes small ones every fifteen seconds. And so if he gets slightly euphoric from his treatment, given all the pain and disruption he would otherwise be suffering, I think that’s fine.’ I also think the cannabis, or the freedom from seizures it provides, will help with the cognitive catching-up he has ahead of him.”
As she gathered up her family and prepared to head off into downtown Denver after the hemp Old Glory had been hoisted, I asked Jackson if she had any message for other families with a child who is living with a serious condition. “Zaki had the EEG of a kid who should be in a wheelchair,” she said. “And now I’m – excuse me a minute – Zaki! Come down from that limb. That’s not strong enough to support you. Where was I?”
“Something about Zaki playing more physically than you might have expected,” I prompted. But Jackson was strolling away briskly, head tilted to the scolding angle, doing what mothers do when their kid is having one notch too much fun.