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.
2 comments:
I know what you mean about being a neurologist. We know our children best and we know what is working or not working. Every drug we try is an experiment. I love those follow up visits in which Sophie is not at the medication level our neuro suggested. At first, I would be slightly embarrassed but now it is what it is.
I certainly know what you mean about being a neurologist mom. It's pretty crazy the things we have to do & choose for our kids, when not even the "real" neuros know what to do next.
I hope you get some seizure relief soon!
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