My daughter is six months old and has lamellar ichthyosis. I have visited this bulletin board since returning from the hospital with her in search of any and all information that I could gather. This is the first post that I have made.
To make a very long story shorter- we have already visited with two dermatologists, had a skin biopsy done, and visited with a genetic counselor. The first dermatologist told us at the time (5 days old) that her collodian membrane was very mild and that she could have one of two types of ichthyosis- lamellar or CIE. The results of the biopsy showed that it was most likely lamellar. He told us to use only two ointments on her because of her age- Aquaphor and Triceram. He also recommended us for genetic testing and we visited with the genetic counselor. Based on our conversation with her, my husband and I determined that testing is not a necessity for us at this time. When we joined F.I.R.S.T., they had recommended a dermatologist that is on their medical board, located near us, and is very knowledgeable. We made our daughter an appointment right after our visit with the genetic counselor- it took almost 3 months for us to get an appointment.
We had our appointment the beginning of November. We thought that it went very well- he really took the time to talk with us and we will definitely see him again because of that. He also said that because of her age that we can't use much more than what we have already been using. He helped to set our minds at ease about a lot of different concerns that we had about Kate’s skin.
I wanted to thank all of you- reading your posts really helped us. Nobody in my family had ever heard of ichthyosis- we were scared and uneducated. We needed some answers as to how best to care for our daughter’s skin. I hopefully will be able to help others as I begin to share our trials and errors with all of you.