Looks Like a Normal Kid But....

"He looks like a normal kid but he just has seizures" 

This is what the neurologist told us today. She said the EEG still showed spikes just as it did in the past but the background is cleaned up very well. This means his brain is able to function properly MOST of the time making it possible for him to be like a normal kid. She said watching him that he looked just like her 15 month old so developmentally he seems to be on track.

She said its great that he says 3 words (regularly) at this age - I have been concerned about this.

We just wish he would say Dada again......I miss hearing that from him. It was always such a sweet sound!

She wants us to return next Wednesday to see her. However, if he is still doing as well next week as he is this week I think we will cancel that one and reschedule for the next for (for just in case). The parking at the Med Center can get very expensive! We still have to go there next week to the TSC clinic and see the geneticist on Tuesday. I hope that is the only trip we have to make there next week.

I was told the major signs to look for with Jace is ataxia - or basically walking like a drunk person, loss of tone, stumbley, etc.....you get the picture. He was like that until we started the Sabril. She said we would notice him not being himself well before the ataxia started BUT that once the ataxia starts we for sure needs to be concerned. Its good to know more signs to look for other than being cranky, sleepy and refluxing.

OH that's another thing! She is pretty sure that his refluxing is all intertwined with the seizures. Since he normally refluxes shortly before or after seizures they are more than likely correlated. I pretty much KNEW this but I thought it was more in line with the status epilepticus he could be in. After the past week I have come to see that he refluxes often with seizures and even more often when he is sleepy and has an episode.

I am getting ready to go to sleep now......Its been a busy day!

Good night!