I spoke with Leigh, Dr. P's regular nurse.

I have no idea what the fruit loop that called me yesterday was talking about... Leigh said she must have been reading something wrong.

Dr. Parrott said that if she has any more that last more than 5 minutes to call the office. If she has then one right after the other to call. Right now he doesn't want to make any more med changes until she has levels checked. Leigh said I could bring here there if I was really uncomfortable with the way things were. By this point I am in tears- I just can't understand why it is happening. We are sticking with the 275mg a day of Topamax and not reducing it at all until they get her levels back. Leigh suggested that the VNS battery may be the issue too, but it is the least likely since it was just checked.

Sunday was the soonest the home health agency could make it out on such short notice- 4:30 pm today But they will be at the house first thing Sunday morning.

I will feel better when we know what is going on, and what is causing it.

I am so glad you at least got to talk to the regular nurse and straighten that out. Hope theyare able to make changes when the levels come back which get Riley squared away.

:hug

Laurie

(((Hugs))) I'm glad you listened to your gut and didn't increase the Topamax. Hope you have a calm weekend. So... has blood been drawn to check levels? Or is that in the future sometime? Wish I had some good advice for you, besides "remember to breathe."

Prayers for you and Riley.

Ya know - I am not saying this is what it is - but CHase had a increase in seizures and it was caused by the topamox - he was in metabolic acidosis that we wouldn't have known about until the drew labs in the ER - It's a side effect of topamax that I'd never been aware of - I was bummed since it had been a good drug for him - but after that whole experience he can't go back on it. So far we are having the best luck with depakote, clonazepam and zonegran. But that's this week (ya know how that goes) HUGS to you both - seizures SUCK!

i'll go back and read the posts. i must have missed something after monday. but, your sweetie is often in my prayers regardless.

lucinda

thats very common with tsome kids.particualry if they are metabolic issues ivolved, or underlysing kidney diseases involved.