The first time he held a toy!
I got a call from the Epilepsy Center's coordinator a little while ago...good news...bad news.
The good news is that they had a spot open up with an epileptologist for tomorrow. Bad news, it's not Dr. Riviello. I had about 20 minutes to decide whether or not to take it. Taking it would mean losing our January appointment and most likely any future of seeing him at all. I was totally frantic. On one hand tomorrow is four months sooner than the other -and Austin needs to be seen NOW. But, on the other hand, I don't know much about this other doc. I specifically wanted Dr. Riviello based on HIGH recommendations AND the fact that I know he's pro-Vigabatrin. If Austin keeps going downhill with his spasms, I didn't know how much I would regret not getting him in with someone when I had the chance.
Soooo, I took it! I did look up this other epileptologist's credentials beforehand, though. He's the director of the epilepsy clinic AND from Canada (well, he went to med school there anyway). He's got tons of publications and qualifications. What went through my head when I saw Canada was VIGABATRIN! Maybe since it's the front line treatment there for IS, he has some experience with it. Our pediatrician spoke very highly of him too, so I decided to take my chances.
The clincher though is that this doc requires a new EEG. The coordinator scheduled us for a 10 am EEG and 12:45 pm dr appointment. Then I get a call back from him. The EEG dept needed to verify our insurance so I was transferred to them..."oh, we're sorry for the miscommunication, but the EEG needs to be done at 8 am...and you need to report no later than 7:30 am..." WHAT??? We just did that in August, and let me tell you people, I swore to NEVER do that again. Not so bad if we lived in Houston...but it's nearly a 3 hour drive! We even got a hotel in Houston and left the night before and it was still a nightmare. Austin screamed THE WHOLE TIME, and we were so zonked we couldn't see straight! Now, there's a slim to none chance that there's a hotel even remotely close by thanks to our friend Ike that blew through! Oh, AND let's not forget that the dr won't even see us until nearly 1 pm. How long does an EEG take??? Not much longer than an hour! Oh, we will have some time on our hands!
BUT, I'm thankful that we are getting in at all! SO THANKFUL!!!!!!! I will let you all know how it goes!
3 comments:
EEGs stink enough...but then early morning! Ugh! I hope you find a hotel.
But mostly I'm glad that you're getting in sooner than you thought. I couldn't imagine waiting til' January! Are they nuts! It makes me grrrrrrrrrr inside! Someday we'll (the IS community) have a system in place that helps parents navigate that crap! But you did good on your own!
Crossing my fingers that all goes well tomorrow. And that Vig ends up being Austin's miracle!
...danielle
oh ps. Would you mind if I added your link to Trevor's Blog? I always ask these days...cause you just never know! *smile*
Holli- I know you won't see this until later. I have really built Dr R up, I am sorry if that made it harder for you to chose the second epileptologist. I guess I will say this. Dr R is the head of the epis there and you can only hope that he has enough oversight to ensure he has a fabulous team. I would trust that he has a fabulous team.
I hope you got your hotel room and that Austin gave you an easy drive. I'll be thinking of you all today and hoping for the best!
Oh man yeah I agree EEG's are tough...spesh with madie and her unruley hair! gunk-a-rama! just feel better knowing they are painless...did the hotels really get wiped out??
I would love to have a 24 hr EEG done on madie to see really how much activity is in her noggin!
Ya know I pushed Vigabatrin for madie..doc said he was concerned about the effects it has on vision..and even with depakote he said she was too young..I guess I was kinda scared to try it as well..oh you are in my thoughts..I just hope lil handsome man makes it thru with flying colors!!
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