Tuesday, January 6, 2009
Out with the old...
"Seriously?? Did you really just stick that bow on my head, Mommy?"
It certainly came as no surprise when I (finally) got the call back this am from the epilepsy clinic. Taper off vigabatrin. Throwing the towel in on this one... The last increase showed absolutely no improvement soooo....That's it...
We're going to give Depakene a try. Not sure what I think about this one. I don't know much about it, and what I have researched doesn't help so much. It has crazy bad side effects...But, from what I've read so far, the side effects are typically due to certain known conditions and drug interactions. I'll be doing more homework before giving Austin's first dose.
The search continues for a new doc. I'm torn between two different hospitals in the area...But, I do know with much certainty that we will NOT be waiting until June 30 to be seen. That's just absurd to have an eight month gap between appointments...when the seizures are still not under control. The typical length of time between them should be 3-4 months!
Anyway, I'm still trying to get Detroit coordinated. I did find out that it's possible to get the testing procedures done during the same week as the initial visit. Yay...maybe that will limit our trips out there. I was told the first time that Dr. C would have to see him and then order the tests -which would be done during a separate visit.
Austin is still walking up a storm! He gets so excited that he sometimes gets way ahead of himself! He's trying to run, but his little legs just aren't going fast enough! He's still making awesome sounds and eating like a horse. We finally got off the formula!!! Now, if we could just get him to eat something besides baby food! We just can't keep enough on hand to feed the little rascal! He just doesn't like to chew on anything besides his hand or toys...he tries to swallow everything whole and obviously gags when it goes down. Even Stage 3 baby foods are an issue. And when feeding coincides with meds...I'm not taking chances on vomiting! But....we're working on it!
Oh, and I found out this am that the genetics test (ARX gene mutation) we had to repeat due to an inconclusive result, came back negative. That's one more down...however many to go....
I'll be updating on the new med...I don't expect to see any results immediately, but we can always hope, right?