Hi everyone! I have been following this website for over 9 years and have never contributed until today.
I have three sons of which one is affected. He was born a collodian baby. It's been a learning experience from the get-go. From infancy through his toddler years, Aquaphor and DML lotion were all we used. We continue to use DML and Vaseline Intensive Care on his skin. He has anhydrosis, which is more of a problem than his skin, because we live in the south where the summer temps can be extreme. However, as he has gotten older, he is able to bear more heat. He does sweat a little on his head and his feet. When he and his twin were three, we put in a saltwater pool and what fun it has been for all of us. The saltwater is great for his skin.
We do not see a dermatologist regularly. As a matter of fact, we haven't seen a derm since he was about five. None in this area were experienced with ichthyosis. Our pediatrician was a great source of support for us and he encouraged me to try different things until I found what worked. He always told me that well-informed parents usually knew better than the doctor. We do see an ENT regularly to keep his ears clear.
I have learned so much by reading the posts on this website! Thanks everyone!
Mother to jcd with CIE born 04/10/2001 as a collodian baby