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.
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.
Comments
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
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!
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!!