Friday, June 7, 2013

Another Option Please

We have not yet gotten the results of Bryce's EEG although I did get an email today from Dr. N asking me which hospital we went to for the test.  He said he will look up the record and let me know the results soon.  Since it is Friday night, I am guessing that will not be until Monday.  Although with Dr. N, you never know!

Anyway since Tuesday I have been thinking about what the results could be and what I am hoping for.  At first, of course I was hoping that he is not having seizures.  Honestly, seizures scare me and I really hope that is not what is happening.

But what is the alternative?  It is just my imagination and nothing is happening?  No, I'm afraid as much as I would like it to be just my over worried imagination, these episodes are real.  Something is happening.  If it is seizures, the doctor will start him on some medication to help them.  If it isn't seizures, what is it?

After hearing from a couple of friends about what their children have gone through and lots of thinking, I've come up with a couple of other possibilities.  It could be that he is having seizures, but they were not picked up on the 1 hour EEG.  So then the question is, if this one is normal, should we do a 24 hour one to be sure?

Then the other alternative which I really don't want to think about is that it may just be a sign of further progression of the disease.  More loss of the white matter, his body shutting down just a little bit more.  I don't like this alternative because there is nothing anyone can do for that.  However, when I think about it, this possibility seems all too likely.  It seems like if it were seizures, they would have been seen on the EEG a couple of years ago when he was having these episodes the first time.  Or at least they would have continued rather than showing up then and not again until almost 2 yrs later?

So really it seems to boil down to 2 options, either 1) it is seizures which means his disease is progressing, or 2) it isn't seizures but rather episodes of something more going on with the loss of white matter or in other words, signs that the disease is progressing.   I'll be honest with you...I don't like either one of these options and would really prefer another option please!  

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