Tuesday, September 30, 2008

Zonegran going up...cross your fingers!

One of my older favorites...he was about 3 mos old

I called the neuro this morning for my weekly report on Austin...and holy cow, she called me back within like 10 min!! I was stunned. She's FINALLY increasing the Zonegran...maybe due to my stern email that something had to be done...NOW! Don't get me wrong, I don't want my baby doped up to the max, but that is the ONLY thing that has shown ANY results since we started treatments. His spasms are out of control and if that's what might bring them down a little, it has to be done. So, we're up to 150mg/day (from 100mg/day). He has certainly shown improvements in the past with this one, so maybe he will get a break for a bit if nothing else.

Can't remember if I mentioned before that we are trying to get an appointment with an epileptologist, but I've got news on that one too. Finally got one scheduled...for January...can you believe the wait? That's with a cancellation too. It would have been March! I'm doing everything I can to get him in sooner, but my resources are limited. Just crossing my fingers that he will get bumped up before then somehow.

The good news is that even with all the extra spasms he's been having, he's still trying to keep moving! It's so funny to watch, he gets up, sees something interesting, and screams and looks down at his feet as if he's willing them to move! Go feet, go!!! He's so determined too...he'll take a couple steps, fall down, get back up...take a couple...fall...back up!! That's our day!!


Anonymous said...

He's go gorgeous! My heart just melts. And I'm not biased - even if I am his Nana!

JSmith5780 said...

I hope the Zonegran increase works!

Did you ask to be put on the cancellation list for an earlier appt? Maybe that'll get Austin in quicker!

Jamie said...

Gosh I so belive the long wait for apointments...keep buggin them :)
yeah I am on the same Zonegran boat...My Madie is on 150mg as well!! She had two random seizure free days Sat and Mon.....I want to hope things will get better for us both! Illll keep ya posted.
Oh what a lil man Austin is!

Anonymous said...

God, do I love Zonegran. It's almost cured me of TLE. I'm up to 400 mg/day but I'd like to take a million. I think I'll try for 600 though.

I wish you success.