Cora had her follow-up neurology appointment today. It went really well. Dr Metrick was thrilled that she has been seizure free for this long (21 days) and is impressed with her continued developmental progress. The plan is to keep her on the Topamax, increasing it to therapeutic doses according to weight and just keep her seizure free. If she remains seizure free for two more months we will do another EEG. If the EEG shows no hypsarrhythmia then our understanding is we will begin to wean her off of the Topamax; if it does we will continue treating in the same manner.
Dr Metrick is also pleased that no tubers were found in her eye exam. She said that the fact that there is no diagnosis is actually a good thing, it gives her better odds for coming out of this unscathed. Not that there really is such a thing as odds with Infantile Spasms. There are so few cases and they vary so dramatically that it is almost impossible to connect the dots or come up with figures. That doesn't sit well with Kris' analytical mind and my control freak tendencies but we feel that if they see some sort of connection to undiagnosable cases (idiopathic) and positive results, that is enough of a statistic for us.
We still live with the fact that we may be raising a developmentally delayed child and that it could develop into other kinds of Epilepsy (one in particular that is just as damaging as IS), but that has moved to the background quite a bit since Cora continues to amaze us with what she learns everyday. And of course how absolutely adorable she is always helps :)
Friday, July 25, 2008
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2 comments:
Love getting more good news! Not only are you so fortunate to have beautiful Cora as your daughter, but she is so very lucky to have both of you as her wonderful parents!
Very good news - Cora is a very lucky (and darling) little girl to have such devoted parents. You are both inspiring to me. If I can ever do anything please let me know. I truely mean that with all my heart.
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