Hello! My grandaughter was born a collodian baby last January. She has been diagnosed with Icthyosis but not which form. They suspect lamellar. I have so many questions I don't know where to begin. I feel there is more we could be doing for her than what we've been instructed to do. How do you care for a baby with Icthyosis? We've been told to use only petroleum jelly because anything else will affect her metabolism. Petroleum jelly just doesn't seem to work very well. She still has tightness of her skin on her face around her eyes and ears. She was born with her ears flat to her skull and they have improved somewhat, but they haven't totally "released" yet. Does anyone know how long this can take? She is also developing very slowly. She is 8months old but at the level of a 4month old. She seems very content to be a 4 month old baby. It's as if her discomfort is distracting her. Her physical symptoms are whitish scales on her arms and legs with thinner peeling skin on her torso and face. Her palms and soles of her feet build up what looks like peanut butter, for lack of a better description. The Dr. did prescribe Aquaphor with urea to be used on her hands and feet to "chew" up this build-up. My family is very frustrated because the Dr's don't really seem to have any experience in dealing with this condition. We live in Kansas. I would love to hear from anyone who has any advise on how to make her more comfortable. Thanks for taking the time to read this very long post.