I've attempted to make contact with a doctor at NIH. I am unsure as to whether or not she will have time to respond to my email. I'm sure that she can't respond to every possible patient with anorexia. Perhaps she will forward to one of her post-docs and they will answer. I'm most interested in the successful types of treatment they may have found for PANDAS-AN.
N is doing okay. His calories are still not up to where they should be. I like to give him two choices for snacks and he always wants to negotiate for a third or fourth choice. As long as the choices are similar calorically, I don't mind the negotiations. However, he seems to be increasingly demanding. He doesn't just want to choose pancakes -- but wants them to be buttermilk and only 5 inches in diameter. He'll still choose the lesser calories in a batch of choices -- even if it is less by only 5 calories. And he still counts calories. I have to sit down and use a calculator to figure out his daily totals. If I were to ask him (which I don't - but some times he offers), he always knows exactly how many he has already had. And he is usually right.
I've also noticed that he is a little sneaky about his calories. I'll tell him that he needs a snack. We'll agree upon what that snack is. Then he won't ever eat it. I've got to be better about following through immediately, instead of an hour later. He will also leave the syrup off of his pancakes or give pieces of his Pop Tart to his little brother, thus reducing the calories overall. I want to nip the sneakiness now. I think that it could become a terrible pattern.