Wednesday, May 10, 2006

Waiting for a reply....

Nothing new really going on! Cameran is still having about 10-15 head drops a day but they are harder like the ones in the very beginning! Today they where so hard if she was walking she would go face first into the floor.
Our Neuro has given us a few options to think about while we where gone on vacation they include ACTH or Vigabatrin. We're not sure what to do just yet. So we are trying to pull info on both to see what would be best. We did go back on the Keppra and we didn't see any changes so that will be weaned out yet again. Hopefully I will hear from the Neuro tomorrow and have more info to give. She goes back to Vanderbilt for a follow up on May 26th we will be having another EEG and MRI this summer some time!
Cameran had a great vacation in Orlando even though she slept through most of it. We ended up getting a pass to use her stroller as a wheelchair since she was snoozing so much- due to the upped notch of Klonopin we started right before we left. Poor baby girl all these meds really wear her out!

She has been babbling up a storm saying Dadadadadadada yayayayayya bababbaba shshshshsh all kinds of stuff that makes no sense but its great to hear her sing!!!! She also got a new tooth making #9 , she also loves to give hugs we just love all these new things and hope they keep coming!!!!To see more vacation photos go to

1 comment:

JSmith5780 said...

Karen- you know my thoughts on Vigabatrin. It has worked WONDERS for Austin. I really think you should give it a try. The 'nice part' is you usually know if it's going to work in a short period of time and the side affects are MUCH less than ACTH. Yes there is some hyperness in the beginning, but the kids adjust to that pretty quickly. I know there is the peripheral vision concern, BUT, remember this has only been seen to be a problem for long term, high dosage use. Any questions, let me know. Austin was on it 8 months the first time around and has now been on it 9 months. He will remain on it for another 1-1.5 years. Both ERGs have shown no negative affect on his vision.