Thank you so much for all of your comments. I'm going to look into the atarax at our next appointment or may even call to get one sooner as this is very difficult. I've just made a few changes suggested on the site and hoping that will help. Got him a few new lotions to try. Tried the sarna but that seemed to make him very cold and uncomfortable... the Eucerin calming seems to be helping a lot. My daughter (IV also) likes it too. Benedryl does nothing to help him sleep or stop the itching.
I got him new PJs made of coolmax material and they seem to be helping (just wish they made them in footed pjs) I'm putting them under his regular pjs. Also made him silk sheets for the bed so the sheets don't scratch him.
I've given up on getting him to sleep in a crib. My back was killing me from trying to pat his back till he went to sleep 10 times a night. Right now he is on a mattress on the floor so that I can lay with him till he goes to sleep and it doesn't matter if he rolls off b/c he's only a few inches off the ground.
I really don't exfoliate him (or myself) much. I have mild IV. I often shave off the scales with razor but obviously can't do that with him. I'm going to try some of the suggestions for exfoliating since I think that may help his itching. With the weather change we are all itching right now.
Thanks so much for the comments. It helps to hear what works for others and just to know I'm not alone.