Tuesday, July 8, 2008

ARGGGGHHHHHH!!!!!!!!!!!!!!!!!!!

That is me screaming! Did you hear it? I'll do it again! AARRRGGGGGGHHHHHHHHHHHHHH!
Sigh.....heavy sigh.................
I'm pissed. I'm so freaking pissed. I am so not in the mood to "put it lightly". I am so pissed I went against my instincts and went ahead with this damn study. I'm pissed.
I thought Lily was going into status on the 4th. We were up north, I didn't have her Diastat, idiot I know, but her summer school keeps it locked up and didn't put it in her back pack before she left and I didn't realize it until it was too late. Anyway, no Diastat and she goes into a seizure that lasted, I don't know 8 minutes. Full convulsions, hard core seizure. Ruined her day. She ended up having a crappy day. Slept and cried. It sucked. Two seizures on Friday (that included the bad one), Saturday none (upped the Keppra, thought maybe that was the trick), but ended up with two on Sunday, and 4 (!) yes 4 yesterday. This morning she already started out with one at 7am. What kind of bull is this. I so badly want to just let loose on someone, anyone. I call the neuro office and the nurse in on vacation.... he has been on vaca for 2 weeks, finally is back, yet I can't leave a message with his "person". I will tomorrow, and maybe that is better. Maybe I will have time to cool off.
I am so angry because in November during a normal neuro apt. I said no GM's but lots of drops. So neuro says she needs to try this med it will stop her drops, but in order to try it she has to be in a study and in order to be in the study she has to GO OFF THE DRUG THAT HAS KEPT HER GM FREE. I am yelling because it is nucking futs that he would even suggest this. Even though my gut said no, I said yes. He made me think this was the cure all, end all. I actually believed him. I knew better. I let them separate her brain in order to stop these seizures and that did not work. I knew that if the GM's came back there is no guarantee that going back on Vigabitrin would stop them again this time. We may be back in that black hole we were living in for those three years of uncontrolled seizures.
Lily is regressing, she never wants to walk anymore. She rarely sits for longer than 10 minutes anymore (when she was up to 30 min) and she sleeps half the day now to shake off the seizures. Exactly back where we were three years ago. Life was dark. Worrying was constant. And then we were finally enjoying life. We were happy. I was able to comfortably send Lily to school without having panic attacks of her having seizures all day long. I knew it wasn't guaranteed, nothing is, but I can't shake this feeling of how upset I am that I didn't go with my gut. I'm sick of Dr.'s telling me what is best for my child, sure you went to school for some odd years, but you know what I have been Lily's mom for almost 6 years. I know my child. I am so angry. So angry with them, the study people, the Dr. and myself. The Dr. and the study are only out for themselves, for this damn study, and myself for not trusting my gut. I have a gut for a reason and not using it is like blindly following. I'm done. I'm sick and boy am I ever pissed.
The thing is, it isn't like ok pull her off the study and go back to what she was on, that won't work. We have to start from scratch and see what works and how. And every change is done one at a time so who knows how long this will take and I am just sick over this. Just sick.
I'll update when I talk to the Dr.

1 comment:

Lesley said...

Oh Kim, Don't be too hard on yourself. We struggle with these kids, always hoping we can get things just a little bit better.
Because don't they deserve that? But sometimes, our guess is wrong. It has happened to me a few times. The guilt is tough. Lily will bounce back in time, she's a strong girl otherwise. Hang in there mom!

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