By sandi | November 21, 2006
For a while there it seemed like Miss Madeline was doing okay. She was still experiencing side effects from the pheno but she was doing okay. Today she has had 3 partial seizures. We are not sure where to go from here.
We do not want to test her further just for the sake of testing. If the test were to find something specific to help medicate her better then maybe it would be worth it, but that seems far fetched, at least in my mind. The testing will not be easy on any of us. We would have to deprive her of sleep, which should be oh so fun, and then take her in to the hospital for an EEG. The hospital is never a fun place to be and we have already been through so much trauma with this little one.
This is such a hard thing to deal with. I want to just fix it for her, and for me. I don’t want her to have to live with this. The only saving grace is knowing that this is harder on me than her. To my understanding her brain just skips a beat during these seizures. She has no recollection that this is happening to her. It is so hard to see her like this. To have her not respond to us for even a minute is so hard.