Have I ever mentioned that I HATE weaning meds?
I know we're still rookies in the world of trial and wean. But if I've learned anything after FIVE failed meds...
it would be that (for Trevy...and us) weaning sucks!
Sucks!
Sucks!
Sucks!
It drives me bonkers that a drug (Banzel...written dripping with sarcasm because I'm still bitter that it failed us!) which didn't do one i-oat-a of good...will most likely spend the next two months giving us hell!
That Trevy's little body becomes attached to these hope pills. Which aren't any hope at all if you ask me. Taste nasty. I know...cause I've licked the applesauce concoction that Trevy always tries to (and sometimes succeeds at) protest slap off the spoon onto my lap. No wonder we have to force feed em' to him! And then if they do help...it's always gone in a flash. And once you've started down the road of failed AEDs...the reality is the next one has a chance of zero to nil of working. Where's the hope in that? And the real kicker is that they then give us a seizure saturated fight when we try to break free.
Ugh...
Maybe this is why I'm on the grumpier-than-normal side today?
It's been weighing on me. Like a ton of bricks. So heavy I can literally feel the weight on my shoulders. Making me slouchy even here at the keyboard. We should have already started weaning. Like over a week ago already. I have a friend who likes to tell me that I hold on too long. Did the same with Vigabatrin. So if Trevy has vision loss...it's totally on me. For draggin' my stinkin' feet...
And here I am...draggin' again...
But that's it...we start the wean tonight...
There...I've said it out loud...
So now I'm committed...
8 comments:
So you're saying your committed? :)
Good luck with the wean.
Yeah...sucks is such a great word ain't it?
Well, I mean great in the fact of how appropriate it is.
OK, I'm done now. :)
Praying that this wean goes easier on little Trevy. He really deserves a break! {hugs}
Good luck...
Weaning does suck. We don't typically have adverse reactions like withdrawal seizures and stuff...But letting go is always a booger. When we started the whole med game I was comforted by the long list of "potential miracles". The list is dwindling now. Every wean is scratching one more off.
And I was just talking about Austin's lack of sensitive taste buds being disturbing. BUt in the med sense, it makes it much easier. He'll take anything without a fight.
Hope it goes smoothly!
((((hugs))))
We are not far into the meds/weaning game at all. I feel the same way though: I probably hold onto a med that is doing nothing for too long. I am doing that right now with Vigabatrin. I just hate the idea that something I had so much hope for is such a disappointment.
Anyway, I am hoping that you will be pleasantly surprised by the lack of withdrawal symptoms for this one.
I wonder who that friend is? LOL Ughhh...worst part of weaning is the withdrawal seizures (even on the meds than NEVER worked)....maybe that's why we all drag our feet with a wean. Just not looking forward to a week or 2 of nasty seizures. But after that...smooth sailing baby. Totally worth it. Soooo glad you've started the wean.
Ugh, I hate it too. Crack head kid for a few days. Kay was the worst coming off the ACTH of course, second was probably the Topamax. Still going strong on Trileptal, no sz's, but still no talkies. She says less than 10 words & hardly signs since we quit constantly reinforcing it. Part of me just wants to scream USE YOUR WORDS!! I know you know what I mean. She does everything BUT talk. WTH???
I too hold on for dear life for that slim possibility that it just miiiiiight work. Can't help it because our list of meds that are left gets shorter and shorter.
Danielle...I am so behind in reading my favorite blogs! Sorry!
With Colby, weaning has not really been an issue yet...We've weaned off Tegretol, Carbitrol, Depakote, Depakote ER, Lamictal, Topamax and now the latest, Zonegran....But I Think because he is SO supersensitive and our doc is SO tentative about the titration AND weaning processes, we might have been spared that agony....
And I can SO relate putting off....I am scared to go up and I am scared to go down....And scared to try anything new and scared not to....You'd think I'd get used to it by now....
And we went 8 years between Colby's first grand mal and the drops starting....You talk about getting comfortable? I actually was....
Never again, though....Not with these drops that Dr. Neuro told me from the beginning are the TOUGHEST to ever get under control...We aren't even 3/4 to the therapeutic dose of the BAnzel now, and I am already discouraged!
Cyndi
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