Thursday, January 8, 2009

You are what you eat???

One of my favorites...taken by Mawmaw (aka Grammer)

So, the pedi confirmed my'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 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. :)


Karen Wilson said...

Hi, I'm one of your mom's online friends and have been watching your blog for Austin. You have so much courage, and I'm so proud of you! I got a chuckle out of the "yellow" skin. When my daughter was a baby, she was a really picky eater and would only eat her skin turned orange! By the way, I'm a nurse (retired) and doctors get mad at me all the time because I don't just automatically go with their program. They give me a shocked look, like saying, "How dare you question me!" Well, Holli, it is your right to refuse any and all of it tests, medication, whatever. I am praying for you every day and pray that you'll find a wonderful doctor and a treatment (meds, surgery, whatever) that will really help Austin. God bless you!

Karen Wilson

baby trevor's mommy said...

Oh girl...I ALWAYS have a pit in my stomache before starting a new med. Cause they're all saturated with awful side effects. Once our pharmacist called me...and totally freaked me out by warning me over the phone at how dangerous this drug is...Zonegran! One of the milder ones.

Have you gotten anywhere with your insurance covering a Detroit visit? I would w/o a doubt say...if you can...GO! I wish I could. But it's expensive...and I have two other kids...but I'm still wracking my brain for a way to do it. If Austin is a surgical candidate...Chugani will know. Or lay it to rest for you.

I'm sorry, hon. I know this sucks. I know it's scary. And sad. But you're not alone! And your little guy couldn't be cuter! ((((((((hugs)))))))