My daughter has lamellar ichthyosis. We have had trouble getting the thick scales off of her head. When we went to the dermatoligist yesterday they told me that when they scales come off then it will scar her head and she will loose her hair. Then they tell me, " oh I cant believe we never told you that". Needless to say I was pretty shocked and upset. Has anyone eles had hairloss due to Lamellar Ichthyosis?
Also, I have to clean my daughters ears out with tweezers, and I thought that if I told her doctors this, surely they would tell me to stop and they would do something. But nope. they just tell me to keep doing it like that but to be careful. She is 16 months old and gets very antzy when I do it and I am afraid I am going to go to deep and hurt her. Does anyone have any ideas of what else I could try?
Jalena, Mom to Kilah born 11/29/08 as collodion baby, she has been diagnosed with Lamellar Ichthyosis.
Also mom to Hailey 4 years old-unaffected