To wean or not to wean?

After an frantic couple of days trying to obtain Austin's Banzel...

(We've been using samples for 3 wks and I totally underestimated the obscurity of this med)

And an $80 rx co-pay...and having only used 1/2 a tablet...

It was time for us to reassess the situation.

I checked in to report on Austin's condition as they had told me to do. There has been no improvement since the start of Banzel -in which spasms have drastically increased. And at 5:30 pm Friday evening, the nurse called me back with our epi's instructions.

Cease the Banzel.

Just stop. No wean. Nothing.

I double-checked with her about that, asking if she was sure he didn't need to be weaned. After all it took a full two weeks just to increase his dosage the first time.

Nope. No wean. Just stop.

Call me a little uptight, but I just didn't feel comfortable just stopping as the enclosed med info precisely stated some conditions (such as seizures) may become worse when the drug is suddenly stopped. Your dose may need to be gradually decreased.

Maybe Austin is on such a low dose that it can be stopped suddenly. But, not one medication we've tried and stopped has not required a wean. So, after going back and forth over to wean or not to wean...I'm weaning him myself.

I really don't feel 100% confident that we have given this one it's full potential. I was torn as to whether or not I should chalk it up as a failed med already after only 3 1/2 weeks...Buuut, I couldn't take the clusters anymore. He was having up to 10 a day sometimes. It was killing me. I had forgotten how much those take out of both of us. One here or there was one thing. Having them back to back...that's another story.

I just HAD to know if it was the Banzel making them worse. And, so far, they ARE much better. AND he's battling a nasty case of the sniffles too, which could even be lowering his threshold for seizures.

Of course he's not off entirely yet, but we've cut the dose in half. We'll just have to see what happens this week.

I'm hoping he'll perk up a bit too. I took a round of pics of him playing and walking last week. He looked droopy in every single one. I miss that wide-eyed boy of mine. That vibrant face he had before all the meds and seizures. I miss him having dry shirts!!! He's having low tone issues with his face so his bottom lip is always hanging down...allowing the drool to flow freely! We're working with him...oral exercises...Nuk brush...chewing...Trying to build up those muscles a bit. Maybe it will help him to get some new sounds out too. His left inner cheek pad has not thinned as much as it should, so his chewing stays to the right...which keeps working the right side but not the left. I'm supposed to be massaging that left side to increase thinning...but he is so resistant!! He HATES oral exercises...He screams bloody murder, which fills the mommy in me full of guilt, regardless of my intent to help him. Kind of like cleaning that crusty nose!! Eeewww...we both REALLY hate that one too!