Saturday, January 9, 2010

Update to previous post

I got a response from the neuro, down in Charleston. He was quick to respond and I am happy for that part. I am so glad I did this b/c I was able to get info that I would not have otherwise gotten. He was very sympathetic but told me that his teaching schedule and travel commitments were too great to give us the time we were looking for. So he suggested another doctor who just joined the center. We had been offered an appointment with this doctor, yesterday but we could find no info on him so we said no. Now that I have his entire name and this doctor's suggestions I was able to find out that he was a past president of the American Epilepsy Society! GREAT! This may be just what we needed! I KNEW that going around the staff usually works or gets us valuable info! So he tells me that he will work with the nurse to get Faith in to see this doctor and get us some help. YESSSSSS...
In response to my friend, Katy about my confidence in the neurologists...Actually, I don't have great faith in any of these suckers but our current situation with our current neuro is terrible. In S.C. we are EXTREMELY limited in neuro.'s, like there are only 4 within 3 hours! And three of them are in one practice! My reasoning for hitting the other side of state in the epilepsy center is b/c we won't be able to leave the state and if we are going to have to travel we may as well travel to the best possible place in the state. Actually, from all of our past experiences with neuro's...they are overworked, unsympathetic, often cold and waaaaay too book smart for their own good or my daughter's, for that matter. When Faith got her tumor dx, I had come in for our regular office visit with my 10 yr old little sister, expecting nothing out of the ordinary. Said current doctor parades 2 students, a nurse and himself into the room and announces that they found a tumor! Just like that! Of course, I fell apart.....he left the room and let the nurse deal with me! How thoughtful and kind!
We haven't found one we are happy with yet! But we have to do something for these seizures and current guy isn't doing anything. So I am thinking if I can get my hands on this other guy's email address...I can give him a heads up on Faith and a little insight into her...then maybe it will turn on the compassion switch. At least, that's my best plan...so far.

4 comments:

therextras said...

"turn on the compassion switch"

heh, I like that. Tough position, but you have a plan and a mindset that will take care of Faith.

I read a post last month where a mother asked "if you could move anywhere, where would you move to to get the best services for your child". Email me if you want it and I will try to get it. (I think I remember who it was. This aging thing is a bear!) Barbara

Amber said...

Yay mama!

April said...

Thanks for saying "Hi" on Caleb's blog! :) I've loved reading about Faith! She (and you) and amazing!

Katy said...

I just geel like so many of these neuros are aiming in the dark. I've even had other parents come up with better info than some people's neuros. Sounds like you're in the same boat. I actually like our neuro, but still. . . none of them are warm and fuzzy and they all seem WAY too fine with seizures for my taste.