Rageaholic

I will mention that even though it occasionally feels like I am being kicked while I am down, I am in fact grateful in a sick and twisted way that I have had problems with nursing and school. It means that Cole is actually getting the opportunity to have both. I just wish that someone had come before me to give me the 411 on everything. I guess that I am paving the way. I am still whole heartedly pushing for a Dravet community here :) I'm not regretting the move, not at all. Just think, anyone else who comes, I will know EXACTLY what to do to get what we want! :)

Moving on....

Update on the med situation.

Oh, did I mention that we are changing medication? 6 weeks of torture...coming up! We have already been at this for 5 weeks (not including when I took Cole off of the NanoVM and Carnitor), there are 6 MORE weeks to go! It is hard to just add or get rid of medications. If you just switch things around and up and down, it gets confusing as to what drug is doing what. So, we decided to take it slow...and I mean slow.

We started with a SLOW wean of Depakote and Topamax. We will be adding Clobazam (the med from Canada), but only after the Keppra wean. We are to the stage where we have eliminated the Depakote and Topamax. I was not half as scared about them as I am about touching the Keppra. 72 hours off of Topamax, Wednesday, it kicked in. The Rage is back. You may recall just how awful Keppra rage is. Let me remind you here or here, if you have not read about how each time we touch this drug bad things happen.This cutie? He has disappeared.
This smiling, mostly sweet boy? He has been replaced by a hitting, tantrum throwing, kicking, screaming version of himself. Seriously, the devil inside has been awakened. We have not even touched the Keppra yet. It is just being metabolized differently now that the other two (well, actually 4) drugs are gone and the strength is intensified. We have to go slow, since we will not be completely taking him off of this one, just lowering the dose.

I'm not sure I'm going to have any hair left by the end of this. There is a promising little box from Canada sitting on my counter and I just have to be patient. I can't touch it yet. Especially since there is now a shortage, you have to import it, and people are running out! Mercy.

I can't wait until HE comes back.