I feel like Nathan was just dx'd all over again...

And, well, I guess technically he was. RE-diagnosed, but I'm finding myself back in that place I was June 10th, 2005. I have spent the last year+ researching everything I could find on complex partial sz's. And after all that time and energy, I'm clueless. I know nothing about tonic seizures. And, tonight after doing some research, I found that what I thought I knew was wrong.

Maybe it's a control thing on my part. But, I feel like I DO have some control over Nathan's health condition if I know all about it. Or maybe it's just that I know what to expect when I have a good grasp of it.

I'm completely in the dark again. Totally flying blind. Anything could come out of left field and it would absolutely blind-side me

And yet, without even knowing the scope of his dx now, I'm finding myself doubting it -- or perhaps questioning it is a better way to phrase it. How do they know they got it right THIS time??? I read up on tonic sz's and it doesn't quite sound like Nathan. JME sounds like him (juvenile myoclonic epilepsy). Coincidentally, I asked my cousin, the neuro about it right after Nate was dx'd. Oh no way he said. It's got a distinct EEG pattern. No chance of that at all.

Well.... I wouldn't say no chance anymore. Something to ask the neuro about.

They dx with a combo of two things: parent descriptions and EEG patterns. Everyone thought Nathan had complex partials because as the neuro today said, "if you are just looking at him during a sz, his left arm is the one affected. That's classic complex partials". Viewing the EEG's they can see his entire brain is showing electrical activity but the video tape of him is clearly showing only his left arm going. So, I'm not upset at the dr's for mis-diagnosing him. Well, except that he just had an EEG done, when... maybe a little more than a few months ago??? Why didn't they see it then? Or didn't they evaluate it since a dx had already been given? And then if they didn't evalutate it, what's the fucking point of putting him through that ordeal???

I don't get it. Unless, his sz's truly are evolving, and so recently so that the previous EEG's wouldn't have shown this distinct pattern anyway?

And, does it matter when or why? Gosh, that's a recurring theme with me. WHY, WHY, WHY???? I am forever wanting to know why.