Baby Steps

Monday, July 23, 2012

EEG and another new seizure

I am sitting in the hospital with Piper for her EEG. We are having this done to find out more about her new seizures. She now has 2 new types of seizures so a total of 3 seizure types that look very different. While we were at the conference we noticed that she randomly started smiling a lot. Since she never smiles we thought this was odd. At first we thought maybe she was just happy to be around other girls like her but they quickly became cyclical and repetitive like her spasms. So we spent the first 2 hours of the conference on the phone with the doctor trying to figure out what to do. We are concerned because she does it all day long so it seems like she is just constantly seizing. So we were not able to focus or really talk to a lot of people because we were busy trying to figure out what was going on. She has had 2 of the 3 seizures since we started the EEG but of course not the one that we really need info on. It is extremely frustrating because our next step with meds is based on the new info which we don't have. She has been a trooper as always but it's already been a long day for both of us.

She is now completely off the ketogenic diet and this could possibly be why we are seeing new seizures but who really knows. There are too many variables to be sure. Regular formula seems to upset her stomach so she throws up a little every time we feed her. She has a lot more energy now so that is a good thing.

We had a good time at the conference and were able to talk to some people and learn more. Piper had a great time, she spent the first two days talking and playing the whole day. She did music therapy and loved it! We saw a lot of real smiles (I think!) and she was very happy.

1 comment:

  1. Hi!I read a few of your posts and our story seems somehow similar. My son was diagnosed with infantile spasms at 9 months. We started him on Vigabatrin on July 27 2010, and that day was the last day we ever saw the eyes rolling and arms jerking. I say that and Im so scared to jinx it. Does he have seizures now? No, will seizures ever come back? sure they will one day, but Im making the best of what I have. He is delayed. He is almost three and still non verbal, still gags on solids and still loses balance when walking. He also has a genetic disorder, NF1. But like you said we are learning to live a life we never expected. Love your upbeat attitude and positiveness.