Hello Lisa,
My name is melissa i have a 15 month old daughter with EHK and have the same problem.
She still has a very large soft spot. Her scales are so thick on the top of her head that her hair is'nt coming in very good on top I sure hope it does come in I'm afraid to use anything to strong but T-cell is a shampoo her doctors gave me it does'nt seem to be working though. I know i was'nt much help but i understand where your coming from.