Our Journey with CBD

Elise has a rare form of epilepsy called Lennox-Gastaut syndrome (LGS). This is a severe form of epilepsy that is "refractory", or resistant to anti-epileptic medications. Over her more than 10 years of being epileptic, she has progressed into this rare form that impacts her life on a daily basis. Ultimately this is brought on by an infection she contracted on her brain during treatment for cancer. This will not go away when she gets older. She will not grow out of it. There is no magic bullet. Most importantly, there is no cure. As I always say, "it is what it is."

Five or six years ago Elise was having a really rough spell with seizures. Honestly, there have been so many rough spells I couldn't really tell you how long ago it was. But I do know that I called my brother one afternoon and said, "What are you doing this weekend? You want to go with me to Colorado?" Prior to the CBD craze, there was a company in Colorado that was one of the first to make CBD oil started by the Stanley brothers. They were approached by a desperate mom who thought that marijuana could have a positive impact on her daughter's quality of life. The little girl's name was Charlotte Figi and she and her family are thought to be the catalyst that started the movement for CBD treatment of seizures. Their family experienced good success with the CBD oil made by the Stanley brothers which they eventually named "Charlotte's Web". You can still buy this today. Sadly, Charlotte died in April of 2020 from what was suspected to be COVID-19.

When I made that call to my brother 5-6 years ago he was instantly skeptical. In his line of work there were A LOT of people being arrested in Kansas for bringing marijuana back to Kansas. But I didn't want marijuana, I wanted Charlotte's Web! At that time, and still a great deal today, there is quite a bit of gray area in the law about CBD. At that time, you could be arrested for bringing it across state lines, and CBD was not available in many stores like it is now. In the end we decided it was too risky for our family. I was not willing to risk being arrested and them taking Elise away from our family. You can look it up. There are a lot of instances of that sort of thing in the last 10 years. I am thankful that much of this has changed.

Fast forward to about three years ago and the FDA approved a CBD oil named "Epidiolex". With that FDA approval came regulation of the quality of this product and also insurance assistance! I was on the phone within days of it becoming legal trying to get Elise an appointment. When we met with our neurologist he told us that getting Epidiolex was VERY difficult and getting approved for it was nearly impossible. The only way we were going to get approved was if Elise was deemed to have Lennox-Gastaut syndrome. That was not something we had ever heard of before. "There is no consensus in the medical literature on the exact definition of Lennox-Gastaut syndrome. Generally, three findings are necessary for the diagnosis: multiple generalized seizure types; a slow spike-and-wave pattern (less than 2.5 Hz) on EEG; and cognitive dysfunction." (source raredisease.org)

We knew that Elise had multiple generalized seizure types. She was experiencing those every day. We also knew she had cognitive dysfunction. That was pretty obvious to all that encountered her. A simple EEG scan showed without a doubt that she had a slow spike-and-wave pattern. And like that, we were approved for the FDA approved drug Epidiolex! All of my prayers had been answered and a "cure" was just around the corner. Well, if you have followed our family at all over the last many years you know that was not the case.

Just like with all new anti-epileptic drugs, the CBD was great right away! In only a matter of days we started to see improvement in her seizures. There was some tweaking of the amount we gave her and some adjustments to other medications and she was doing pretty well. The seizures were not gone, but they were far improved. It was more hope than I could recall in the few years prior. Then, everybody's friend puberty came into our lives. Let's just say that puberty and epilepsy don't play nicely with each other. From what I understand of girls, this change in hormones is a doozy for the average female teenager. For someone with epilepsy it is horrible. Maybe I'll write more about that in the future.

I have received more questions in the past month about some of the conversations going on in the state house of Kansas where they have been debating medical marijuana and its approval. Everyone wants to know my opinion. As I have been telling all that have asked me, I really don't know what is going on. Once Elise was able to get on the FDA approved drug, I knew I personally didn't have to fight that fight any longer. However, I do know that it is a fight that deserves to be had. But, I don't have the capacity to do it right now. I'll leave it to those that are most affected. 

Like all anti-epileptic drugs, Epidiolex has been found to be successful at eliminating seizures in about 33% of patients, found to reduce seizures in 33% of patience and have little to no impact on seizures in the remaining 33% of patients. We are in the "found to reduce seizures" group. It has not been a miracle drug, it certainly did not bring a cure with it, but it has brought on some improvement. There are currently more "good" seizure days than there are "bad" seizure days. But, there are rarely ever seizure free days.

In the end, CBD for Elise is one more tool to try and treat a debilitating condition. CBD has little known side effects which makes its use very attractive to many. The one thing I like about this FDA approved version is that it is regulated. All the other CBD products that we can find in the general public are not regulated. It is the wild west in CBD land. Manufactures can claim whatever they would like to claim and do not have to provide evidence. The products that you find could have trace amounts or no true CBD at all. To me that leads to way too much false hope and disappointment. I don't know if CBD is right for everyone, but I do know what it has done for my daughter. I'm always glad to talk about it to anyone that asks.