After almost 3 months of being seizure-free, Waverly woke up this morning and had three bouts of Infantile Spasms (IS), and then another episode this afternoon. :( The good news is that we know what they are and have a plan of treatment, so we are on top of things. If she is still having them tomorrow, the neurologist will call in a prescription for her called vigabatrin. He feels like that's the best option for her right now to give her body a break from hormone/steroid therapy (the other two treatment options). The one downside of vigabatrin is that it can cause peripheral blindness. That is a quite common side effect, and because of that the drug just recently became available in the U.S. but the government keeps close tabs on it and regulates it heavily. So we'd have to order it. There is also close follow-up with eye doctors to keep a check on vision. (Waverly already has glasses ordered that are not related to the vigabatrin since she hasn't had it yet.)
She is also to have a follow-up EEG next week. We already had a regularly scheduled appointment with the neurologist on Tuesday, so we'll just go up a bit earlier and have the EEG. He wants to check to see if her brain activity is back in hypsarythmia (sp?) or if the IS are just break through but not associated with the disorganized brain activity.
So, that is our plan as of now. We'll keep you updated as to what happens in the next few days, but for now, we'd appreciate your prayers that the IS would either resolve or that we'd be able to get them under control very quickly. Thanks!
No comments:
Post a Comment