Tuesday, June 30, 2009

Update

Andi Jane got some nasty summer flu. Her fever hit 103.9 last night and she was talking crazy. She still has a fever today but of course in true Andi fashion she still pretends to be just fine. We knew she was sick yesterday when she went to her room and laid down. No TV. No fights. Just went to lay down.
Lily is doing well, she is having more seizures and I swear it is when ever we up the Clobzam (the one that was the study drug). Her drops slow down, but it seems to make her have these more severe myoclonic clusters. I really don't think it was the removal of Topamax or we would have seen these sooner. I don't know. I am trying to adjust her other two meds before adding Topamax back. She sees neuro next week so we will chat with him about all this.
Summer school is going great!
Some bad news is we got her x-ray results back and there is a curve in her spine so now they are referring us over to scoli clinic. I'm not sure what to expect now. I know this is/was a possibility but I really wasn't expecting it. I know the horse therapy is helping and will continue to help. I just hope we don't have to brace and all that jazz.
I am praying Lily and Oliver don't get this flu Andi got. We are still planning on skipping out of town and going to Greer for a week, get out of the heat and enjoy the fact we don't have to be anywhere, no plans! I am so looking forward to the next three weeks of not having to go anywhere and having to get everyone up and ready by 8 am!!!
We got a new dog yesterday. She is a rescue dog and as sweet as pie! We are already getting attached! She is a year old, already house broken, hasn't chewed on anything yet and doesn't shed!! Can't believe someone didn't want her!

3 comments:

Reagan Leigh said...

FYI...I was told that one of the side effects of Clobazam is that it can increase myoclonics. I think it's rare and it only affects certain people that are prone to that side effect but Reagan has responded that way in the past to similar drugs. So far so good with Clobazam, but who knows. I'm always leery about meds that have this side effect.

Kim said...

I had no idea about that! thanks for the info. i am about ready to just ditch that one and see about some of the new ones out there. we go to see the neuro on the 13th we will discuss this further for sure!
thanks for the info, good to know esp since dh wants me to put her back on topamax and i am certain that is not why she is having those

Reagan Leigh said...

It's so hard. You always question every little change you make. It's all such a guessing game. That's what makes it so hard to trust your doctor, because he's just guessing too!

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