We started to explore marijuana, CBD, and THC for seizures when we heard about Charlotte’s story. Charlotte has Dravet syndrome, febrile, and afebrile status epilepticus. She was having 50 generalized tonic clonic seizures a day. She was also on 8 anticonvulsant medications.
Dravet Syndrome is a severe form of intractable epilepsy and it usually starts before the age of 1. Intractable means the seizures are not controlled by medication.
When Charlotte was 5 years old, she had significant cognitive and motor delays. She required a feeding tube and needed much more care. Charlotte’s family was desperately seeking help. They looked into the benefits of CBD.
They started to test a type of marijuana that was high in CBD and low in THC. Her parents began giving Charlotte low doses of plant extract and started to increase the dose over time.
- Month 3; >90% reduction in generalized tonic- clonic seizures and weaned from other AEDs.
- Month 20: 2-3 nocturnal generalized tonic clonic seizures per month and feeds and drinks by herself and autistic behaviors have improvement, walking and talking.
Is it me or does the Health Care System just suck? I think we could all agree that it is very complicated. I mean, I don’t get it. My life right now is waiting on prior authorizations, managing claims and expenses. Basically, I have to deal with all the annoying tasks. My risk of having a seizure increases because my medications is dependent on approval of Health Insurance. If I miss my medications, a seizure can happen. Why is it so hard to get these damn medications? It’s not like they are Oxycodone.
Stress is one of my triggers, I am stressed because of health insurance because I’m anxious on waiting for them to approve the medications! So I have the stress of stressing and that can provoke a seizure! Nah, I can’t blame all my seizures on my insurance, but it is literally a pain. I mean I am having LIFE threatening seizures and I’m waiting on them to give me my medications. It really feels like I am bugging CVS all the time and I’m the inconvenience. It feels like I am screaming to myself, “Please, Please, I don’t want to have a seizure, I need my meds!” I seriously do that? CVS hates me.
I’ve always been self conscious about my weight. Especially the numbers on the scale! When I was in high school, I always wanted my body to be thin. I was about 125 pounds. Now being in my twenties, I wish I was my weight in high school. Lame. When I put on the “Freshmen 15” in college, I started signing up for these “fad diets”. I still do it now. I admit it. I’ve tried a lot of these diets that definitely did not work because of me (it might have worked if I finished them!). In the last 5 years, I’ve spent at least $2,000 on personal trainers, nutritionists, and those popular shakes. What is my problem? My problem is…
I have no self control and discipline. I need these to help me get to my goal of not only losing weight but feeling good. I have to WANT IT so bad that I don’t give up or cheat.
When I was first diagnosed with epilepsy, it was so hard for me to find a good doctor, especially when you don’t know anyone with seizures who can give you recommendations. I was interviewing a bunch of neurologists from San Diego and all the way up to Orange County. My mom gets a recommendation from my Grandpa’s doctor. My Grandpa had lung cancer that spread to his brain. So that doctor recommended this new epilepsy doctor at the Hoag hospital. His name. Dr. David Millett.
Apparently, he was was like an “epilepsy doctor celebrity”. That’s the best I can describe it. When we met him on our first appointment he says “You don’t need to get another opinion”. Why does he need to convince us that we should trust him ? But whatever, I needed someone ASAP.
First we begin testing to see if we could find something that is causing my seizures. The MRIS, EEGS, PT/CAT Scan, etc. There was nothing we can find. No groundbreaking results. So, the trial and error of medications began.