Joniba, have you contacted FIRST? I called and asked and they said that they didn't know about you. There are SOOO many resources available through them. 215-997-9400. Please call! Or give me your number or email via IGM and I'll get you to the right people. I hate to think that you're going through this alone.
Ichthyosis-en-Confetti Type 2
Husband, Nathan - 10, Elliot - 7, Oliver - 4, all affected.
I also have an unaffected daughter, age 8.
email: jennifer at confettiskin dot com
facebook - find me on "ichthyosis mommy spot" or "friends of ichthyosis"