Editor’s note: Heather Jackson is the executive director of Realm of Caring, a nonprofit organization that works with a Colorado medical marijuana dispensary to advocate for families using Charlotte’s Web.
The following was adapted from an interview with TechKnow contributor Crystal Dilworth. It has been edited for length and clarity.
(My son) Zaki started having seizures when he was 4 months old. He has a rare, severe form of epilepsy known as Doose syndrome. By the time he was 5 years old, he had had 500,000 seizures. He had been through 17 pharmaceuticals. He was receiving hospice, palliative services, and his prognosis was poor. He was having an average of 200 seizures a day — seizures in which he would stop breathing.
(Now Zaki is) 16 months seizure-free.
You get to the point where you’re just waiting for a new drug (to be approved by) the FDA. I had heard of another family that was using medicinal cannabis in California, so I started researching — just like I did everything else that he tried.
Our counselor through hospice asked if I had considered (Charlotte’s Web, a medical marijuana derivative made by a Denver dispensary). She couldn’t recommend it, but she gave me some phone numbers.
Our neurologist made the recommendation. I felt good about that, because a lot of them won’t — even in Colorado. But he knew where Zaki was (with his treatment), and he knew I was responsible enough to research the supply and the testing.
We saw immediate results. He was seizure-free for 48 hours after starting. Because of our history — almost a decade of (treating) this — I find it really hard to be cautiously optimistic. I was thankful, of course, for the result we were seeing, but I wasn’t sure how long that was going to last. It was a little bit crushing when the seizures came back.
Then the seizures returned, (so) we titrated up (the dose) and adjusted our pharmaceuticals. It was a roller coaster for the next three months while he would cycle 10 to 14 days of no seizures, and then they would return. Then we would go up a little on (the amount of) Charlotte’s Web.
His last seizure was Oct. 3, 2012. Zaki is completely pharmaceutical-free. He’s not on any Western medication right now. He just uses Charlotte’s Web. That’s all.
It’s been relatively benign compared to the other treatments that we’ve tried — the side effects profile of the pharmaceuticals that we’ve tried and the collateral damage of the seizures and really high doses of heavy-hitting drugs. He was incontinent. He couldn’t remember a family member’s name. It was just no way to live life.
Now I can have a conversation with my son. He’s sleeping better. He’s eating better. He’s learning. He knows his colors. He’s writing his name. The turnaround is just absolutely incredible, and it’s not a honeymoon period. We are over a year into his healing. Our whole family can heal.
Finding community in Colorado
We were the second family to start (using Charlotte’s Web). There was no community, so we were the pioneers in figuring out dosing and how slow to go. Now a lot of people say, even if Charlotte’s Web doesn’t work (for them) — and it may not — they’re not going anywhere because of the community that’s here.
They’ve left their friends and their family and their support, but they’re with people who get it and who are living it. As bad as I feel to have to tell people that they have to come to Colorado (because federal law prohibits shipping Charlotte’s Web out of state), I feel good that there’s a community waiting here for them to give them some respite.
My husband wasn’t giving me a big hug when I told him this is what we were going to try. I felt the need to explain to family members what we were trying, (even though) I never felt the need to explain anything else that we had tried. But all of our family and friends who know what we’ve been through have been overwhelmingly supportive.
We’re not rogue parents. There’s a lot of science behind cannabis, and it's extremely safe. There is literally not one documented death from cannabis. There are 50,000 who die every year because of epilepsy. In just the amount of time that it takes to do this interview — we lose someone every 10 minutes to a seizure-related death.
I understand, and I hear the concern (that it seems extreme). Holding your child, praying for them to take their next breath is pretty extreme. There are 19,000 peer-reviewed articles about cannabis. (People) can educate themselves and learn more about it if they want to. And I hope they never find themselves in a situation where they have to make that choice.
I myself am a product of the ’80s and (the anti-drug PSAs that frequently ran on TV) — “This is your brain on drugs” and the egg in the frying pan. I get that. I was brought up that way. But I researched it, and my son is living proof that it can work.
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