Thanks for posting, Paula. lol...no, this board was not my idea, I think you have Laura and co. to thank for that. I am just the youth issues moderator.
I was diagnosed with Netherton's Syndome about ten years ago, when i was eight or nine....my parents would know more about it than me medical-wise. It has given me trouble with my hair, as in, it breaks off a lot and does not grow very quickly. My skin is very dry, red and scaly, but it has improved with age.
How old is your son?
I am not sure if i am of much help with your son's problem, i can offer advice and empathy, but being only eighteen, I don't feel confident that i know enough about the condition (though i have lived with it since I was born) to give you sound advice that will really improve your son's condition...lol..i don't want to seem like i am turning you away, but maybe you can post on the parents message board...or the general discussion...
"I am a mother of a son that has netherton and I am gald that you started this If anyone come on here with nethertons and has information or can give me some in sight I would love to be emailed with it as my son is just two and it has been a hard two years. but this is a great thing that you started carly