Drug weaning

C. in a hydrotherapy session with an annoying 'floatie'

I am happy to report that we are now at half the original dosage of Inovelon (rufinamide) without ill effects (so far). 

 

Actually, we are seeing more communication in the last couple of days. By that I mean C.'s "calling" to us (a moan-like sound) from bed when either wet or thirsty/hungry. Admittedly, she has done that in the past but it's more frequent since the latest drop in dosage.

 

In addition, the hydrotherapist is reporting impressive performance. Yesterday, for instance, C. kicked off the annoying "banana" floatie wrapped around her leg, placed there to spur her to move her legs while floating on her back. Then she flipped over onto her stomach, face underwater and blew bubbles! She hasn't been doing bubbles for a while now.

 

We hope to part ways for good with Inovelon in two months. It never did C. any good.  

 

If you're baffled that we kept her on it for four years with no benefit here is why. When we started, neurologists were loathe to eliminate drugs. They'd happily add new ones but would leave the old regimen untouched. It was common practice to have epileptic children on four, or even five drugs.

 

Today the goal is a maximum of two and, hopefully, less cognitive fog.