Caught In The Weed

Over the past few days there has been a lot of information in the news about the approval of Epidiolex by the Food and Drug Administration for treatment of seizures, (At this point, it is approved for only two types of epilepsy. These are Lennox-Gastaut syndrome and Dravet syndrome.) making it it the first drug derived from marijuana to get FDA approval. This is exciting news to be sure, yet for me, it is bitter sweet. I am beyond thrilled for all of the families that have been given new hope and a new plan for treatment. THIS DRUG WILL SAVE LIVES! I want to spread the word and celebrate! At the same time, I want to scream and say why did this take so long!?! Where was this approval 3 years ago when it could have saved my sweet boy’s life?

This news comes on the heals of a hard realization for me. A friend of mine, shared that her daughter recently had a seizure. The first in a while and the biggest so far. My heart, of course, went out to her. I know what that looks like and I know what that can do to a child and their family. I also know that the image is one that will never leave your brain.

It was literally by fate, that she came upon me when she needed someone that knew what she was going through to vent her thoughts and feel heard and understood. To help my friend, I went home and looked through all of the paperwork that I have regarding Matthew and his treatment (Just for the record, I have every piece of paper that I have ever gotten or taken notes on) to share any helpful information that I could. By doing this, every memory of every doctor visit, hospital visit, specialist and therapist visit, not to mention all of the seizures he had and medications my handsome boy had to endure, came flashing in my head. As I said, you can never un-see those images. They may hide for a while, but they are never gone.

She had mentioned CBD oil (cannabidiol) and recently, there has been a lot of talk online about where to get it and what people are using it for. As I began reading all of this and saw how much new information there was out there and how easy it is to get CBD oil , I realized that my sweet Matthew has been gone for 3 years. To say three years, it doesn’t seem like a long time but to realize it and feel the significance of three years without a snuggle from your little one, seems like a lifetime!! How much has changed in the world around us. Kids that have gotten bigger, changed and moved on to amazing adventures. Families that have grown. In my head, time should be standing still. Kids should be looking the same and be interested in the same things that they were three years ago. But of course, they’re not. Even in my own house, my beautiful daughter is growing and changing and doing remarkable new things. I guess when you are in it, it seems natural but when you are separated, that’s when the clock stops.

Medical advances seem to take a similar path. When you are in it, you get all of the information you can. You learn all of the options available and are able to form your plans with your plan B always in sight. Until you run out of plan Bs. Three years ago, we tried every option that was out there for Matthew. We tried medications including Keppra, Depakote, Lemictal, Trileptal, Felbamate, and Depakene, to name a few. When we had tried and failed at three of these, we tried vagus nerve stimulation or VNS and when that didn’t work, we tried the Ketogenic Diet. Some had no effect on his seizures and some only worked for a short time. CBD was new and still only available in a handful of places. We had serious conversations about moving our family to Colorado and even Europe to try it. Each of these decisions on medications was made with thought and care, weighing the risk the reward. As his seizures got worse, we needed to risk more to find the reward. Each of these options brought side effects and most are chemical in nature. There have been studies for for many more than three years that showed the effectiveness of CBD oil in children with epilepsy, so why did it take so long to approve? If it had been just three years sooner, it might have saved my child just like it will for so many little ones to come. So here I am, caught in the middle of grief and joy.

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