Hi! I am new to this board and relatively new to ichthyosis (x-linked). My father, my sister's son, and my son all have ichthyosis x-linked (ixl). My son was diagnosed while I was still pregnant with him (via amneo). He is now 18 months old and does not sit still long enough for anything! He has a relatively mild form. No scales what so ever on his body except his scalp. He has a lot of dryness on his back, tummy, and legs but no scales except on his head! Thank the good Lord for that. I am having a problem with removing the scales effectively. He does have a lot of hair (not too thick) but the scales are noticably getting worse. I have used the baby oil soakings and the mineral oil soakings and that is all. My pediatrician told me to use Elidel! Yeah right, that did not work! Most of the doctors around here do not even know what ichthyosis is let alone how to treat it. Any suggestions? I have heard of some kind of shampoo that will loosen the scales and help keep them to a minimum? Anyone out there know of the name?? Any advise is welcome. Thanks so much! This is a great site!
Mommy of 2