Thanks for your advice. How long does it usually take to get used to the meds and do you eventually feel like you did off of the meds or do you have to get used to a "new kind of normal"? It's not easy to read over the side-effects and still administer meds to your little one...and even harder to witness them and still feel like you're doing the right thing for your boy. I wonder if it would help me if i had a better understanding of how these meds work... I read that the dr's don't even know how Keppra works but they think it works differently than other meds. Darren has only tried Tegretol (rash) then Clobazam which had no side-effects that i noticed... but it did not stop the seizures for him, and now he is still on Clobazam and starting Keppra so this is still fairly new for us. We're planning on taking him off of Clobazam once the Keppra is up to "therapeutic" levels.
Fiddling is a living heritage lesson for us too as my grandfather was a fiddler like yours. I remember sitting on the table playing the spoons to the music wishing i had a better instrument!! ha Not sure if you know what it is to play the spoons but all the kids who didn't have an instrument would hold two spoons back to back and clack them on their knees in time to the music. Good memories. It's good for any kid to find something they are good at and i think especially when there is the potential of others looking at them like they are in some way "injured" or different. I want Darren to be recognized for his excellence, not his struggles.