Kay had her neuro follow up yesterday. Pretty good news all around. We increased our dosage of Topamax a little to try to counteract the spasms she has been having lately. We are hoping the new dose will eliminate any of the break through spasms she was having which is was only one cluster of 3-4 spasms like every few days for the last few weeks and one cluster of twenty a couple of days ago, which is a dramatic reduction from before the Topamax days. We are going to give it about three weeks on the new dose before moving to the big guns, Vigabatrin.
The best news of all, is that he has "high hopes" for Kay's development. He said he has every reason to believe that she will be developmentally normal, which is big news in our family. We do still have a small gap to fill with her development because of the ACTH, but she gains new skills almost everyday. Yesterday she even managed a four syllable AH-GOO-BA-GA. I guess she told us! She had a lot to say, but to anyone who knows, Kay, that is no surprise. She is always putting her two sense in.
We are going to delay her repeat EEG for at least a couple months to see where she is at and whether or not she is going to need Vigabatrin. It's scary to think that she may be crawling by the time we have our next EEG! Good luck trying to keep her down.
Tomorrow we go for our well check with the pedi doc, although we already know that Kay is down to a svelte 16.4 lbs, compared to her previous weight check with Dr. Neuro at a whoppin' 17.8 lbs just three months ago, just before she finished the ACTH. She is still our little chunky cheeks though!