Since getting the results of Lily's labs last week, I've been pondering what I want to do wiht her care until the Ganaxolone arrives at Children's. I think I want to take her off of all meds, or at least decrease the meds to the lowest amount, and get a real, true baseline of where she's at. She's been on dozens of medications since she was diagnosed in November of 2005. THat's a year and a half of medications.
So, I took her Topamax down by 20% a couple days ago. I'll probably get my hands slapped by our neuro on Tuesday, but there is just NO SENSE in medicating her this heavily when it's not working. I'd like to take the drugs down & give her learining & alertness a chance to pick up.
I am a neurologist Mom, after all.