Wyatt averages about 200 seizures every day. These seizures are grouped into clusters throughout the day. Sometimes he cries, seems disoriented or even laughs. They always disrupt his life and his development. I hate them and I am pretty sure he does, too. I usually refer to them as “fucking seizures.” (If he does start talking at some point, I will take full accountability for his bad language.) Technically, these seizures are called infantile spasms.
There are only two FDA approved drugs for infantile spasms. Two. We have tried 10 anti-epileptic drugs and the Ketogenic diet to stop them. This type of seizure was first described by a doctor in 1841 and apparently not much headway has been made for treating them since that time. Ultimately, I think that is part of the reason why it didn’t seem like such a stretch to try cannabis. There really isn’t anything else. We have tried a lot of other things and I know parents who have tried more. A parent of a child with intractable epilepsy would do anything to stop this terrible disorder. It steals our children’s lives right in front of our eyes … every single day.
Below is a link to what Wyatt’s seizures look like. (God bless his teachers at daycare. They endure watching him experience these terrible events nearly as often as we do. Fucking seizures. (Don’t say that out loud at school if you are reading this!))