Tuesday, July 13, 2010

Epilepsy Part II

Since I'm writing this after midnight, I guess I can say that Daniel has his second opinion with the neurologist later this morning.  I'm really nervous but kind of excited at the same time.  This has just been the longest process...waiting 6 months just for the second opinion...and I'm hoping we can get this done and over with.  We're at 10 months since this whole thing began at our pediatrician.

I'm just so confused at to why all this stuff isn't lining up.  Why has Daniel had one abnormal regular EEG and one abnormal 24 (48) hour EEG with the spikes lining up in the correct area of the brain for seizure activity but nothing is wrong with that?  Why are they dismissing family history of this particular kind of seizure (this is where I really wish Mike had gotten tested, too)?  Why, if it was no big deal, did they keep us for 48 hours when the test was only supossed to be 24?  We were told you cannot "turn off" seizures and therefore it's ADD...which you can't "turn off" either.  Why is my child so special that he's the "1 in 100 that can walk around with these misfireings in his brain and it's nothing when 99 other people would have Epilepsy?"  But we were never able to push that stupid plunger when they happened.  Because of that he's fine...go home and wait for a real seizure.

I'm so mad that we were dismissed like that.  "He doesn't have Epilepsy so go home."  Awesome.

We, kind of, know this new neuro.  His son was Hannah's kindergarten Sunday School teacher.  Rabbi Vered, our educational rabbi, put us in contact with him.  After having a long conversation with Vered in the middle of Wal-Mart on a random day in January around midnight, she made sure she hooked us up the following Sunday after Family Service. 

I'm hoping that, at this time tomorrow, we have some answers.  I'll keep you posted. 

1 comment:

debbie said...

It is almost noon and we are waiting on an "epilepsy part III"...

(btw, my word verification is "cooti" ha ha