Andrea I know it's not the same condition but I have something called an epilepsy passport, produced by the maker of my drugs firm. It's a small book with typical questions/requests/answers in all the European languages. It may be worth trying to get hold of something similar if your son is taking any medication. I don't know if such a thing exists for his condition, but you never know, you can only ask. This is a longer-term suggestion as I know you're in France now. Hope all goes well!