Thursday, January 8, 2009
You are what you eat???
One of my favorites...taken by Mawmaw (aka Grammer)
So, the pedi confirmed my suspicion...it's the veggies making him yellow! I pretty much knew that, but being the nervous Mommy that I am, I needed an expert to tell me! Especially since our new med Depakote (it's not Depakene like the nurse first said) can have serious adverse effects on the liver.
Oh, and speaking of...when I got the Depakote filled and brought it home, I sat down to read the info that came with it..as I always, always do...Even after researching online and finding out how many kids are on it, I was floored at the warnings on it. I decided to hold off on giving it to him until I spoke to the epi about it...
It's a long story, but I got the feeling that he really didn't appreciate my questioning his choice of meds. Call me crazy if you want, Mr. Epi, but I was NOT going to give Austin a drop of that stuff until it was discussed with me! I think since he is my child I have every right to be informed -without seeming like a loon!
Sooooo, I finally ended up starting it mid-afternoon yesterday. Nothing yet...
Guys, I'm totally overwhelmed about what direction we need to be going with his treatment. One minute it's Detroit, then a new epi, then MRIs...there's the keto diet and other AEDs...My brain just feels like one big ball of mush. NOTHING is making sense here! I hate, hate, hate where we are taking Austin for treatment...but, we really only have one other choice without going across the state. Then, say we do that...the new epi will want their own testing done...well, where does that put Detroit? Why would we repeat tests? Dr. C said that there's no reason to repeat the MRI because he knows for sure he would do one. How does that affect how a new local epi would treat Austin's seizures? Then, on top of that...coordinating these tests in Detroit is becoming quite a challenge...let me just say INSURANCE. They want evidence that suggests there is a focus to authorize further testing to find it. ????? There is none! All I have is Dr. C's opinion from an email! None of his previous tests (EEGs, MRI, etc) picks up anything...I thought that was the whole point of seeing this guy. I'm lost....Where is my instruction manual???
There's my vent for the day...sorry. :)