I wanted to let you know how things were going with Z, because I know I wrote a somewhat cryptic post a few months ago when I was freaking out about a few things...
The good news is that the pediatric neurologist we met with today at CHOP was very sure that what she is now experiencing is indeed migraines and NOT seizures, regardless of what the EEGs say and regardless of what we witnessed when she was very little (although he did say that he is also quite certain that what we saw back then was in fact seizures...what's important, and what I am taking away from this, is that she is no longer experiencing them). He would like to get Zoe off the Topamax because she is not sweating properly on this drug, and that's a side effect that can be quite serious (we have been careful with her, but we are in agreement that if there is a different drug that does not have this side effect, we should try it). And the really great news is that she hasn't had a migraine all summer! Since right around Valentine's Day, she had been getting one every three weeks, until we increased the current drug (which we will now be tapering off). It's been more than eight weeks, which is really about as good as it has ever been. We've also made some dietary changes to eliminate some of the common triggers, so it's not clear if the increased medication (that we will be going off of) or the dietary changes have finally brought the migraines under control, but I feel confident that we can figure this out. She will be starting a different drug called Elavil (it's also used for depression, but obviously, that's not what Z is taking it for).
Part of the reason I was so upset before, is that I was doubting whether or not she had ever had seizures. I had "Doctor Googled" some information and came upon information about a rare condition called Benign Paroxysmal Torticollis that I'd convinced myself Z had as a babe. Basically what that would mean is that she was wrongly diagnosed with a seizure disorder and would have been taking anti-siezure medication unnecessarily for many years. Now, honestly, I don't know for absolutely sure that she had epilepsy, but I do know that I can't change what's in the past, and right now the problem is migraines, not seizures, and they seem to be getting more manageable, so that is really good news.
Okay, sorry for the rambling post, and thanks, as always, for caring.