Leandra, I would call the charity. They can direct you to someone knowledgeable nearby, and they also have a medical consult group. Your dermatologist or pediatrician can contact the charity and get into a conference with the Tele-Ichthyosis program.
Finally, if you can swing it, see if you can get to the conference in Orlando at the end of the month. All of the doctors will be there.
FIRST's number is 215-619-0670.
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"