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mama2G 05-22-2011 12:32 AM

Hello, new here...
 
Hello, I'm new here and thought I'd post instead of just lurking.
My limited experience with seizures before my daughter was bound to a roommate in college who did not take care of himself very well and a middle school student who collasped on my floor in the middle of class. I guess those were both "gran mal" type seizures...easily identifiable...?
My daughter is almost 9 months old now. She started having seizures on day one, and thats a long story I won't go into now. She was put on phenobarb but was too sleepy to eat. Then put on keppra...
When my sweet Baby G came home with me after 2 weeks in the NICU it seemed like she never stopped crying. Some nights it was 4-6 hours, straight. (Believe me, I tried everything.) Everyone kept telling me to wait for the magic "3 months old" marker and the "colic"/constant crying would go away...I had an inkling it wouldn't. I read about keppra...
We talked to her neuro about weaning her off the keppra, but he wanted to wait til she was 6 months. So we did.
At 6 months I was so excited to meet my daughter, what would she really be like without keppra in her!? Of course I only realized after that it would take 3 months just to get her off it.
But we never made it there (off keppra)because at half way through the wean she started making funny jerking movements. On a Saturday afternoon (read: neuro not in) after google/you tube searching the jerking movements my husband and I were pretty sure we were dealing with Infantile Spasms. The ER sent us home with a pat on the head (telling us it was myclonus, sleep jerks) and instructions to up the keppra again just in case.
Long story less long: the last EEG showed hypsarrhythmia. She has IS. We're on keppra, topamax and cytra-2. I do feel she is less aggitaged, but at what cost? She seems more sleepy but not sleeping more than before. We have another EEG this Thursday.
What does this mean for my beautiful baby girl? I've been reading some pretty crappy stuff about IS.
We are extremely overwhelmed and feeling very alone. I got on here hoping to get someone who understands and help me understand what my sweet girl is going through...and will go through.
Thanks for reading and any help.


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