Next week we head to Swedish to visit Hewitt's neurologist. He has an hour long EEG and then we will have a follow-up appointment with his neurologist to talk about our next steps. He is currently still on 2 medications and we are hoping to begin a slow wean of those as he has been without seizures for OVER 2 years now! Woo - hoo!
Lately we have been seeing a lot of strange behavior from Hewitt and it's been hard to watch. He has been incredibly moody - ranging from depression symptoms, giddy/happiness, grumpy, etc.. I realize that all children have mood swings, but this is something different. It's like an extremely exaggerated version of all of those things. The hardest one to watch is depression because it just seems so unnatural for your 6 year old to talk about hating himself, how he's ugly, etc...it's pretty heart wrenching. My theory is that with each growth spurt he has, (which if you've seen Hewitt lately, you would guess there's been a lot) his body has to readjust to the dose of medicine that he is on. As though we had lowered the dose and he is readjusting to that. His dose hasn't been changed since right before his 4th birthday in 2009, so it makes sense to me that this could be the cause. I am really hoping that is all it is and that it's not some other neurological issue for him to deal with.
I will update again next week when we have a new plan in place. I am super excited at the prospect of weaning him off these drugs and seeing what he is like without them in his system!