Still waiting...

[Denae]

I have been waiting here at work with Riley for Dr. P's office to call. Leigh just called, they want to get her Topamax level checked too, he thinks the seizures may have something to do with the level being way to low.

Hopefully they will be able to get it from what was drawn Sunday.

Leigh also mentioned that he may want us to do a VEEG, or at least another EEG to check for changes. Dr. Boyd wanted them to do this back in May :rolleyes: As much as I hate the idea, it seems like the right move to make at this point.

Anyway this is just a huge ramble b/c my nerves are shot...

[mybaboo]

(((hugs))) I was following your posts on BT2 and am praying for some relief for sweet Riley! Hang in there!

[kathleenandjoe]

Geez - you all have had a rough time:( I hope it all gets straightened out soon. Hang in there (like we have a choice right?).

Thanks for your support over the med mix-up post I made this week by the way.

Hugs,
Kathleen

[langansmom]

I was just checking in to get an update on Riley. I hope you hear from them soon. Seems like a low med level could certainly cause problems. Whatever the answer is, I hope they find it soon so you guys can get a break.

Please keep us posted.

(((hugs)))

[Tylersmom]

Im sorry Riley is still going through so much. Hugs and prayers to you both.

[Mom2Ava]

I am sorry Denae. Seems as though lots are having toublew/ seizures lately.
We go for a 48 hour EEG in a few weeks. They are looking for ESES. ( electrical status epilepticus of sleep).

I agree EEG might be the right thing for now. I know they are rough.

[Denae]

I just posted over on the other forum that I gave Riley diastat not long after I spoke with Dr. P's nurse. It did seem to break up the clusters she seemed to have. She has only had 3 drops today which is a nice change from the
10+ she has had every day since they started.

I went out and got a digital camera that will record video so as soon as I can figure it out I am going to email Dr. P some video clips of her seizures. Which at this point isn't hard to catch. Figuring out how to use the camera is the challenge..

Fingers crossed for a better night and better tomorrow...

[just laurie]

Hope you guys are soon squared away again. What a rough patch this has been...

Laurie