Today Stacy started to see James have some pretty intense spasms. The way she described it is that he would have a full spasm, which was followed by several twitches and some loud cries. She’s not sure if the cries were because he was in pain, or if he’s scared.
We’ve tried everything that was supposed to help him with these spasms. The top two treatments for infantile spasms are ACTH and Vigabatrin. Neither of those worked. We’ve tried several different seizure medications. None of those have worked. We thought we had exhausted all options until the neurologist suggested the ketogenic diet which has been shown to be an effective treatment for infantile spasms. James started the diet at the end of May and right now we’re not sure if that is working either. It might be too soon to tell so we’ll give it a little more time.
This makes me so angry. So helpless. Why is nothing working? Is James just beyond help? Is he just destined to suffer from infantile spams, and seizures for his entire life? What kind of life is that? I don’t want to give up hope, but if this diet doesn’t work, I think we’re out of options.
Please say a prayer for James tonight before you go to bed.