Our babe is a 6 month old with EHK. He cries alot when he is uncomfortable. He cries a ton more than our first two and I do not think it is temperament - I think it is pain. Generally, Evan does not like being moved too much and sometimes he cries when being held only to stop when he is placed in his bouncy seat. We manage Evan's pain with morphine, infant tylenol and homepathic teething tablets. Skin aside, at six months he is doing well. There are some concerns about fine & gross motor skills. He weighs a little over 13 pounds. A palliative care specialist came to our home and evaluated Evan. He thinks our pain management is on target and if anything we could be more liberal with it. The palliative care doctor was referred by out pediatrician. I am unfamiliar with Netherton's syndrome, but when Evan was a newborn - he looked like a burn victim minus the char and our sage pediatrician is very compassionate about Evan.
Best wishes to you and your daughter. Feel free to e-mail me firstname.lastname@example.org