On August 19, 2014, Anabelle had her last seizure to date. This brings up mixed emotions. Her last seizure hit when we were driving back from celebrating her rehabilitation from a seizure that was eight months prior. When Anabelle has a seizure, her entire left side is paralyzed. She loses the ability to talk, walk, read, remember math facts, and she also has to learn to ride the bike, again. I say again because this is fourth time Anabelle had to learn how to do all of these things after a serious seizure. It takes up to eight months to rehabilitate her. I call her rehabilitated when she is able to crack a joke. It takes a lot of brain work to know when to tell a joke, timing, etc., and that is lost and regained, as well. Then we celebrate at her favorite restaurant, Ruth’s Chris Steak House of course.
Anabelle was already on two anti-convulsant medications. If you are unfamiliar with these medications, they are very sedating and slow down all cognitive function. This can make learning extremely tough. After the last seizures, I realized we were at a turning point and had to put Anabelle on a third medication to stop her seizures to control the effects of Sturge-Weber (to stop the brain from calcifying). The realization came with knowing that a third medication would really slow her down even more and make life even harder. We wanted to find an alternative. We tried dietary changes. Six months earlier we started a paleo lifestyle to bring down inflammation in her body. We built the chicken coup and all! It helped her with headaches, focus, and frequent stomach complaints, but unfortunately it wasn’t enough to control the seizures.
While sitting late one night in the hospital room with Anabelle days after her last seizure, I received a message on Facebook from a dear friend from the fifth grade, Kelly Lynn Humes. The message is as follows:
"Hi Julie...I am keeping your family in my thoughts. I'm so sorry for all that Anabelle is going through. My husband and I watched a documentary the other night. I hope it’s not presumptuous that I share the link. I certainly do not know anything about Anabelle's condition, but I felt compelled to share the link. The little girl suffers from frequent violent seizures. You likely heard about this. Sending much love and positivity.” She sent the link to CNN’s Marijuana stops child’s severe seizures.
Being uneducated in the topic of medical marijuana, my eyes popped open wide when I saw the title of what I was about to watch about a child’s seizures being stopped by marijuana. I read it and thought, "Am I supposed to blow smoke in my paralyzed daughter’s mouth? How am I going to do this? Legally?!" Yes, I contemplated doing exactly that. Anything to stop the seizures.
In the video I learned about low THC marijuana, and how it has many healing properties plus it is the marijuana with high levels of THC that makes people get high. With low THC people would only get the medicinal benefits.
After watching a late night youtube video on the uses of medical marijuana I immediately emailed Dr. Anne Comi. I said, "You have to watch this. They are controlling their child’s epilepsy with an all natural herb that they cook down into an oil. This child on the video is going from 500 seizures a week to a few." Dr. Comi said she would look into it. Two weeks later, I heard back from her. She had been searching the research and didn’t think it was going to work because of the different proteins in a Sturge-Weber patient’s brain. A few days later, she called me back and said she found something. She said that if we take one chemical from medical marijuana and only use it, it should not interfere with cognitive function and work with the different proteins in a Sturge-Weber patient’s brain. She explained that it would have to be tested in a medical trial first to use it in clinic. I spoke to my husband about funding it, and Dr. Comi started the trial.
Alan and I are ecstatic with the outcome and quality of life children are having with Epidiolex. Without the insight into the benefits of herbals from an old friend speaking up, we would not be helping children today with this safe, cognitive friendly alternative.