This is a great video of how CBD is being used to treat Epilepsy in kids.
I’m Dr. Alan Shackelford. What you will see in this brief presentation is remarkable. It’s unlike anything that I in my 30 years of medical practice have experienced, and it’s based on medical marijuana.
You may have preconceived notions about what that means, but please watch the next few minutes with an open mind. I think you’ll be astonished at what you learn.
So, Charlotte has Dravet syndrome. It’s a severe pediatric epilepsy. The seizures, when they start with Dravet, are status. They don’t stop on their own, so they’re 20 minutes or 30 minutes or longer. I think her first one was about a half hour. Every seizure after that for two and a half years was a status seizure, and some are four hours long, two hours long, and at that point she’s incubated in the ER, in the pediatric ICU, and medicine doesn’t stop them. So that’s … We went through that about two and a half years. We got diagnosed at two and a half years old.
A few times her heart has stopped using these drugs, and I’ve done CPR on her. A couple of those times, I just sort of let go of the fact that … just to keep trying with her, and I said my goodbyes to her. As I’m doing CPR on her in the hospital, kind of prepared myself for the worst. She’s still here, but she’s been through a lot to get to this point.
The doctor, she heard her history of seizures at that time and said, “We have to pull this” … Her last med that she was on. Her exact words: “We have reached the end of the line with medical options for Charlotte. And I don’t know what to tell you. There’s really nothing else we can do.”
That’s when we met the Stanleys and that’s when we got started on the CBD. After six months of … I really didn’t think she would survive the seizures. Three hundred seizures a week, roughly. Grand mal tonic-clonic seizures a week. Just to put in light what 300 a week is, it’s about four an hour, so one seizure every 15 minutes. Sometimes it is every five minutes. It just never stopped.
So to see her seizure free for seven days, she went seven days instantly, and we’ve been on it nine months and from that 300 seizures a week she now has zero to one tonic-clonic a week. So it’s greater than 99% seizure reduction. It’s amazing. It’s just absolutely amazing to think that she wasn’t going to survive, and look at her now: she has a life.
During that time, she lost the ability to walk, talk, eat and really participate in life at all. She couldn’t do anything. She just sort of lied in my arms catatonic, and I thought that was it. This just wasn’t a life for a person. But here we are.
I was looking around for whatever I could find at any dispensary. I met the Stanleys and they started growing a strain with the highest CBD we’ve found in the world, and they named it after Charlotte for her success. They named it Charlotte’s Web, and that’s what we’ve been using since for the past eight months.
This particular plant has 0.5% THC and 17% CBD, or cannabidiol, the non-psychoactive ingredient. This plant is so important, the CBD is literally stopping the progression of epilepsy. This plant right here is called Charlotte’s Web after our favorite little precious Dravet syndrome patient named Charlotte.
This is the reason we’ve spent two years developing this plant, and the world doesn’t know about this yet. We are able to treat Charlotte through doctor-approved channels with no psychoactive effect for Charlotte or any of the patients that are able to take this CBD plant. That’s why we called this the future of medical marijuana.
I know that seems silly but-
A lot of people think when we tell them what we’re giving our daughter, their first reaction is, “Well, is she getting high?” No, that’s not part of it at all. That’s a common misconception.
There’s no psychoactive side effect. It’s non-psychotropic. But the CBD does seem to have other side effects that have been amazing, actually.
Behaviorally, it’s helped her. It’s helped her appetite, and I can’t think of any possible negative side effect it has had. She’s just experienced a better quality of life all the way around because of it.
To be able to control seizures, the way that this evidently is able to do in a condition which results in absolute uncontrolled seizure activity is unprecedented.
Because of this medicine and these high CBD plants, we have our daughter back. We have a life back. She has her life back.
Zaki has a rare catastrophic epilepsy diagnosis called Doose syndrome. What that entails is lots of seizures every single day, delayed development, autistic tendencies, that sort of thing. In the end, we had tried every medication that’s indicated, 17 treatments in all, plus the ketogenic diet, which is a special diet for epilepsy. So we really tried everything that we could. Really none of them helped or they would make his seizures worse. The side effects from the medications, of course, are ridiculous.
I pulled out some scrapbooks so you could see what Zaki looked like on steroids. He doubled his weight. He was having the EEG shows … the EEG’s just electrical scan of the brainwaves and it shows the seizure activity, and he was having 200-plus seizures an hour. And so there are eight people in his room watching him seize over and over. We were there about a week. They just confirmed the diagnosis and said there was nothing else they could do.
We were there to get the confirmation of what we really dealing with, but to get help … for them to help us and they said, “We’ve really tried everything” in their bag of tricks that they had.
Really not to be melodramatic, but you’re in really the fight for your child’s life. We finally made the decision, “Yes, we need to do this. We need to go ahead and get his red card, start this whole process.” We were at the end of our pharmaceutical rope so to speak. Just that the safety profile was just unheard of. I knew that I wasn’t going to kill him giving him too much, which I couldn’t say for any other medication that we tried.
A very common and obvious question is how do you administer cannabis to somebody like Zaki, who’s 9 years old. The first thing that pops into a person mind is, “What do you do? You pop a joint in their mouth like the other end?” Absolutely not. It’s either administered by capsules, which they swallow, or oil syringes.
You know, also I think people need to understand that everything is tested so we know exactly the milligram dosage of CBD that we’re giving … can have a [dial 00:07:54].
So people think that we’re stopping these seizures by maybe getting the kid high, which isn’t the case. It’s actually quite a conundrum because what’s happening is virtually all of the anti-epileptic drugs on the market are psychoactive. This can have a [dial 00:08:12] extract is non-psychoactive. So we’re replacing psychoactive medications with a non-psychoactive medication, which happens to come from cannabis. That’s kind of hard for people to accept at first.
It’s brilliant because we’ve been able to come off his psychoactive drug completely. At Zaki’s worst, he had 200 seizures an hour. And it has been 106 days now since his last seizure.
I get to say after almost a decade, I get to meet him for the first time without all this seizure activity and drugs. If you can imagine waiting 10 years to meet your kid, it’s unreal. It’s absolutely unreal. I don’t even have the words. I don’t have words to describe it.
I don’t know how you thank someone who has literally saved your son’s life. I don’t know how you thank someone. Really after the euphoria wears off that we found ourself in such good fortune, that we found the Stanleys, that we found people who care and who grow this plant, you get angry that we couldn’t have tried this 500,000 seizures ago, that no one even mentioned it as an option. We love our doctor. I love him. I feel like he’s in the fight with us. He signed for us. Most doctors won’t. But he’s never, even in all of these years, shown us the compassion, that the Realm of Caring has.
Thank god we live in Colorado. But if we didn’t, I would do whatever I needed to do to be able to provide this for my child.