We just found out yesterday that our 5 month old has Ichthyosis. We're not sure what type yet, and we weren't told anything about the condition except that there are many different types and that we'd come back in Feb for the derm to check the baby's skin. We were told to use CeraVe cream on her skin several times a day and to add RoBathol bath oil to her daily baths. Does anyone have any experience with these? The pharmacy had to special order the bath oil, but we started the CeraVe right away. Annalie's skin seems to be less dry, so hopefully we'll continue to see improvement.

Annalie wasn't a collodion baby. She was born with really peely skin that dried out right away and became dry and scaly. The nurses all thought that she was overdue, but I delivered at 39 weeks and the baby never measured ahead at any of my ultrasounds. Our pediatrician believed that her dry skin was just normal baby peel, but after 2 months of no improvements I called for a referral to a derm. It took almost 3 more months until we could get an appointment (where we went yesterday).

It's been a long journey so far trying to figure out what is wrong with Annalie's skin, and I am glad that I pushed the ped to get a referral to a derm. I'm so glad that we're finally getting some answers, and although I was completely overwhelmed yesterday with all sorts of info about Ichthyosis, I think we'll be okay. Thankfully Annalie seems to have a pretty mild case, and from looking at pictures it seems to be CIE or lamellar. She doesn't have any on her face, but the rest of her body including her scalp is very dry. She has rather large scales on her scalp, but the rest of her skin is just dry and flaky.

I'm sure I'll have many questions to ask and would love to be able to hear stories of how other parents are helping their young children deal with this condition.


Edited by kekonen (12/17/09 02:46 AM)
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Karen
Mom to Annalie born 7/17/09 (Mild Lamellar) & Hadley born 3/20/06