Wednesday, February 25, 2009

finally

I took a deep breath.


And another.


And in between Trevy's (mad) clusters...I finally picked up the phone and made the call. To pull the Vigabatrin plug.


Watching his seizures not only increase in number the past few weeks. But also intensity. So violent that they've knocked him backwards off his feet. Yesterday I almost poked his eye out playing the "where's your nose" game. A spasm jerked his little head forward with unexpected gusto. And I've just finally reached the peace point with letting go. I've said this before. But this time I'm serious. This time I actually made the call. And sent the email to follow-up.


We've given it a full three months. And while we've had a handful of good days. It's not enough. Trevy's still having 50-100 seizures on any given day. And it's just not enough.


So now we try Banzel.

9 comments:

Adesta said...

Oh D...So sorry to hear that the Vigabatrin didn't work for Trevy. I pray that the Banzel will work! {hugs}

Mmmmaaahvelous said...

*deep breath* These decisions are never easy. It's hard to let go of the hope that goes with each med/treatment tried & to not let that hope cloud reality that things aren't working as we hope.....That's where I have found myself anyway.
Good for you for taking the step to find something better for Trevy. I'm sorry the Vig didn't work. There has GOT to be something out there for Trevy!
Hugs to you & Trevy!
Margo

Anonymous said...

I'm really sorry that the Vig didn't work. Hopefully the Banzel will work for Trevy. Anything to get those seizures to stop. Have you considered the Keto diet? Just wondering. I am hoping that we don't have to go that route. I'm not quite sure why, but it's probably cuz I love food so much.

Sophie's Story by Elaine said...

Ugh Danielle...I feel your pain. It is hard to give up hope on a drug that you had so much hope in. So much time invested in. But, I am HOPEFUL for the first time in so long that Banzel will be "IT" for Sophie.

labonte4 said...

D,

I feel you pain. It's never easy to pull the plug on anything. We've just started to pull the plug on Keto...and...well...it's been rocky. A few emergency calls to Dr. G *LOL* We will be trialing Steripentol next.

I really hope and pray Banzel is the one! I've heard great things from sooo many people about it. I'm excited for you guys!

Dawson said...

Hey, Sorry the Vigabatrin did not work. They made Dawson's seizures worse when he was on it too. Our prayers will be with you as you begin a new one

JSmith5780 said...

YAY I can comment again. I had no word verification on my ipod while in Boston.

I am so sorry the Vig wasn't "the one" for Trev. I am hoping the Banzel is as good as it's appearing to be. Fingers crossed!!

Monica, James, Connor McGuire said...

So sorry, but welcome to our hell. I told James the other night that our neuro must really suck b/c we haven't even been told about Banzel. uggggghhhhhhhh!!! ->slams head against wall! We have an appointment wednesday...i will be asking about it. hope it is what works for our precious little trevy!! hugs to you....

Holli said...

I was really crossing my fingers on the vigabatrin for Trevy. But, I hope with the wean, the intensity will go back down like it did with Austin. As much as I wanted it to be the ONE, I'm so glad we are off of it now. He is doing so much better without it. I was really shocked that something we had so much hope in made it like 10x worse! It's hard to let go of that vision of it working...I'm so sorry sweetie...