Monday, August 10, 2009

Med update

Our first morning in over a year where zonisamide (Zonegran) wasn't a part of the medicine mix.
That was definitely different! I'm so used to the routine where the applesauce is always present with breakfast. No matter what he's having, it's always been accompanied by a side of applesauce -blueberry, strawberry, mixed berry, or any berry to spice it up...containing our old standby...zonisamide. This morning there was none. Just good ole Cinnamon Roll oatmeal -one of Austin's faves. It felt like I was forgetting something. I even reached for it when I opened the fridge out of habit.

We are one week away from completing the wean. Now, he'll only be receiving 50mg at night until next Monday. We're currently at 1ml of Felbatol three times daily & 0.25mg of clonazepam (Klonopin) twice daily.

There have certainly been some differences, but whether or not it's related to the wean, I don't know for sure. Like I've said before, multiple changes at once throw my judgement off. I see the changes, but I can't pinpoint the reason. The stopping of Depakote, the wean off zonisamide, the addition of Felbatol...and now the improved EEG. Who knows what's responsible for what. I hate that. I thought the medicine changes were spaced far enough apart to be able to clearly assess any notable differences -good or bad. NOT!

Never fails. There seems to always be questions surrounding any difference in Austin. I remember last year when the seizures drastically started increasing. First, I thought it was the late and short dosing of meds (Keppra and zonisamide) and the stress of our hurried hurricane evacuation. Then, we found out he had an eye and ear infection that week. That had to have been it. But, the seizures never decreased. After that, he contracted a bacterial infection from the antibiotics. That was it. Once that cleared up and the seizures didn't, I was clueless. I wanted to point my finger at something. Anything is better than the seizures increasing for no reason. And the idea of pinpointing the culprit (even if I don't know what it is yet), seems much easier than accepting that it's all out my control. If I even think there's a logical explanation, and it's just a matter of finding it, I have more peace of mind. Maybe that's not a rational thought process, but...what can I say? This is not an easy life. We all find have to find our own coping mechanisms. That's one of mine.

I got a little off topic there...sorry! My mind is bouncing all over the place...

Getting back on track, I've been seeing some great new skills trying to emerge. I've mentioned before that Austin figured out how to crawl over pillows and such. Now, he's trying to climb the walls...literally! Or the cabinets, or the sides of his play yard... I got him one of those stuffed fold-out couches last week, and I found him standing on top of it, facing the wall, with his little leg propped up as if he were Spiderman about to make his way up. If you know me, I freaked and ran over there thinking it was only a matter of time before he lost his balance and fell backward! He did. But, not quite fulfilling that elaborate mental picture of mine!

By the way, Step 2 is still going strong. No major boo-boos yet. The day after that post, he started having some spontaneous drop seizures again, which made me a little apprehensive about letting him go again. But, thankfully, he's been sitting again the majority of the time. And, if he doesn't, I can usually spot the changes in his mood which is my cue that something's coming. Crossing my fingers that this continues as long as the seizures do.






4 comments:

baby trevor's mommy said...

OMWord...he suddenly looks SO grown up!

...danielle

blogzilly said...

I was thinking the same thing. Maybe it's because the blog pics we see every day are not current. But yeah, he really looks much older in the new photos. All boy!

JSmith5780 said...

Congrats on one less med! And congrats to you on staying strong with Step 2.

Holli said...

D and Ken -Maybe it's the new 'do? I was amazed at the transformation from baby to little boy after the cut last weekend!

Jen -Thanks! So far so good!