How The Charlotte’s Web Marijuana Strain Helped My Son

When your child could die in his sleep from a seizure, it's time to get creative.

Charlotte's Web
Photo courtesy of Kathryn Gurley

The Fresh Toast is asking you to Tell Us Your Story about cannabis and your health. We know that there are many of you out there suffering from cancer, multiple sclerosis, Crohn’s disease or other illnesses that can be helped by medical marijuana. We want to share your story. 

Today’s story comes from Kathryn Gurley about her son, Ben.

If you told me 20 years ago I would be reminding my son to take his cannabis every night and advocating for cannabis to be available for everyone, I would have laughed in your face.

I was never into pot. But sometimes when you want to do the best for your child, you have to think outside of the box and be creative.

Our son, Ben, suffers from epilepsy and ventricular tachycardia, a heart issue. For the last 17 years, since Ben had his first seizure after seeing the Ringling Brothers Circus, I have been on a quest to prevent seizures.

We moved to Baltimore from Virginia for the Epilepsy Center at Johns Hopkins, went on the ketogenic diet and tried many different drugs for epilepsy. We traveled to Children’s Hospital Boston, Atlanta Children’s Hospital, California and London searching for answers.

At one point Ben was taking 15 to 17 pharma pills a day with horrible side effects and still having seizures. The doctors mentioned taking out a part of Ben’s brain and we walked out. It was at that point I went rouge. First stop was to a naturopath where we started monitoring Ben’s blood work.

Our naturopath Paul Faust, ND, started putting back in all the nutrients, such as taurine, which were very low in Ben’s blood. Taurine levels are low in most epileptics. We changed Ben’s diet to a South Beach diet with no gluten. All of this helped and we started lowering Ben’s pharmaceutical medications.

We saw the light and it was in combining the best of alternative and conventional medicine which today is called functional medicine. Ben has seizures during his sleep which are hard to monitor. We had an Emfit monitor which worked for many years until the seizures changed and the monitor did not pick them up.  We are now trying the Embrace Watch by Empatica for seizure detection. When Ben has a seizure, we give him diastat (Valium) and place oxygen on him. The key is NOT to have seizures.

And how cannabis ties into all of this?

A year ago when I was in Los Angeles visiting with a high school friend, Ben and I experienced a breakthrough. My friend has a daughter with epilepsy, and she was telling me how the consistent use of cannabis had vastly improved the quality of her daughter’s life.  She helped me with the dosage and started Ben on CBD oil.

Ben has been using Charlotte’s Web — a high-CBD strain effective for seizures — before bed every evening for a year and has had over three-quarters fewer seizures this year! He is taking even less pharma medication, enjoying sports, life and is a happier guy.

We are currently finishing up a book focused on 21st century health and going outside the box. We are learning more about cannabis and trying to help others have access to CBD and other cannabis products.

When you have a kid who could die in their sleep from a seizure, you have to get creative. Everyone should be able to benefit from cannabis or at least be afforded the chance to try it.

I am grateful to The Fresh Toast for giving families like ours a voice.