“I am starting to get very pissed off at these stupid seizures!!! They have gotten worse and we have not done a single thing different!!! We are going to take him off the Keto diet next week and introduce a new med. I just want James to stop get frazzled… that is what it seems like… just chilling with mommy then ab crunch, and a cry!! UGH”
~ Stacy
Stacy posted that on Facebook a couple of days ago. Next month is Epilepsy Awareness Month, but in our house, we are aware of it every single day. Every day for the past two years James has some sort of seizure activity. Actually, it might be longer than that. There was a day shortly before he was born that Stacy felt him fluttering or kicking inside the womb. She thought it was odd because he didn’t do much moving at all throughout the pregnancy. Thinking about it now, is it possible that he had a seizure in the womb? Who knows? Maybe.
As Stacy mentioned in the quote above, they have gotten worse, not better. I think we’ve tried everything at this point. ACTH and Vigabatrin—which are supposed to be the top treatments for infantile spasms—didn’t work. Various seizure medications, and combinations of seizure medications haven’t worked. The ketogenic diet, which James is on now, hasn’t worked. NOTHING has worked! We don’t know what else to do. It’s hard and frustrating to watch him have a spasm or a seizure and not be able to do anything about it. We’re not sure how much he understands, but I hope he knows that mommy and daddy would do anything to take these away from him. I guess all we can do at this point is pray. Can you say a prayer for James before you go to bed tonight? He could use all the prayers he can get. Thank you.
In this video, James is in his stander and out of nowhere, he has a seizure.
