Wednesday, March 21, 2012

Such a Big Boy!

It took Levi a couple weeks this time to come out of the stupor from increasing Clobazam (Onfi).  He was tired and floppy the majority of that time.  Now he's alert, doing well with head and trunk control, smiling and grinning, kicking his legs, and more.  He doesn't mind being put up on his arms or elbows, which he used to hate, and works hard to bring his head up while in that position.  We took him for a walk all around the neighborhood on his little trike, and he loved it!  I was worried he would become uncomfortable, but he was thrilled the whole time.  He wore his little sunglasses, drawing attention wherever we went.  He's always been good at that though. lol  

We increase Clobazam/decrease Phenobarbital for the final time this weekend.  I'm assuming this is our max dose.  We haven't really seen results with this med, which is disappointing because it's supposed to be so very effective with infantile spasms and focal seizures.  It's not over yet, though!  Although I usually look forward to med increases in the hopes of seeing less seizures, I'm dreading this one.  I just hate to see him go from happy and trying to progress back to limp and floppy.  Who knows, though, he may sail through this increase with energy.

If Clobazam does not work, the next thing we will try is the ketogenic diet.  Please keep Levi in your prayers!

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