Thursday, April 16, 2009

The Pill Pulverizer

My sweet aunt-in-law got me this contraption a few months back...didn't need it at the time, but knew it would come in handy...

Used it last night on our new med...Banzel.

A total surprise...because I've spent the last week or so dreading yesterday's visit and talk of the ketogenic diet. No mention of that. Weird. He's the one that said we would be discussing that as our next plan for treatment nearly two weeks ago. Who knows.

Anyway, our visit to Texas Children's was quite a bit better than our every aspect. Staff was better, epi was better, PARKING was better...and no labs! Much better.

Those were actually our exact words the second he walked out of the room. Mom and I turned to each other, and in almost perfect sync, we both said, "Much better.."

To sum it up...He is in agreement with Dr. Chugani about Austin having cortical dysplasia. Right now may be too early to see it on an MRI, which is why we will be repeating again in months to come. Probably six months at least. That is potentially a very good thing though. If that is the case, we may be able to remove the problem area surgically. He said it may just be too early to detect at the moment because of the growth and development of his brain. When he's a little older and his brain more developed, he thinks it may be more visible (on MRI) and easier to locate the origin of the activity on EEG. Right now, with the hypps, it's just chaotic all over his brain.

So, the plan...trial the Banzel with current meds Zonegran and valproic acid. The Banzel and valproic acid have a special interaction, therefore the Banzel will remain at a lower dose than normal (but with the same effect).

I mentioned the Topamax/vigabatrin combo...getting little reaction from him. He explained that Topamax and Zonegran are so similar that he would prefer not to try that at the moment. He said it's likely we would have the same result as we did with vigabatrin/Zonegran. X that for now.

Dr. Chugani did suggest we try Banzel...because of that, I'm eager to give it a go. I'm not exactly thrilled about seeing his already unsteady feet become potentially worse. Austin's always tolerated meds pretty well with minimal side effects...but he's already wiped out after just one dose. He konked out after a 2 1/2 hour nap and slept all night. Then, was awake only 2 hours before snoozing again...Seepy boy!

Besides having to schedule the lumbar puncture for next month and and EEG in three months, that's all I've got in terms of updates on our visit.

Thankfully, it was not what I expected. It was uneventful and surprisingly easy...I was all ready to really give it to 'em too! I guess if you expect the worse, it's gotta exceed your expectations!! ;)


JSmith5780 said...

SO GLAD everything exceeded your expectations! Good luck with the Banzel.

Jonathan said...

So our guys are Banzel Buds! That sounds WAY to cutsie for the reality tho...huh?!

Our neuro has always suspected cortical dysplasia. Of course the PVL (which is typically bilateral) kinda threw everybody for a loop. And so far no CD has been revealed by MRIs for Trevy. I'm still waiting for my neuro to send the PET to Chugani! I think she may be intimadated?!


If we fail Banzel...Keto may be our next move...

I mean...if Chugani doesn't feel surgery is an option right now anyway.

Suddenly I'm super tired...I need meds!

btw...does the pill pulverizer work well???

We've been mixing the Banz with choco pudding...and Trevy doesn't seem to mind? But sometimes it's just easier to syringe it...


Love you & your little man!


Kelli TenHaken said...

I am curious how your little guy does on Banzel, because we are also considering it for my daughter Ruby's seizures. Keep us posted on how it work!