Tuesday, November 27, 2012


This afternoon we got the results from the MRI Simon had last week. We had been hoping that through more detailed imaging we would find a clear path for surgery, so that the area(s) causing the seizures and ESES could be removed. We were told that if possible this would be Simon's best option since it is likely he will become resistant to medicines at some point. Unfortunately, today we learned that there is no clear path for surgery without significant risk.

This is definitely a setback, and at the moment, the news is pretty hard to bear. In fact, I think the only thing worse than hearing that there is something very wrong with someone you love is learning that there isn't a cure available.

There are, however, treatment options. There are a variety of medicines to try and we will exhaust them all if necessary. In fact, we have already started and I really do feel that we have seen improvements in Simon's language and awareness since he has been on the newest med. (Unfortunately, the side effect of this med seems to be constant vomiting -- we are hoping a different formulation of the same drug will be better tolerated.) We have an EEG scheduled for December 8 and we are optimistic that it will reflect an improvement.

This isn't the news we wanted to hear, and though I am struggling to "be okay" with it all I have to do is take one look at my happy, amazing, tough little guy and know that whatever else may happen I am so lucky to be his mom. 

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