I am so excited! This sounds so much like what my son has. My DS is 17 months old and has been diagnosed with Lamellar. His Derm, who's a member of FIRST's med board, has never seen it present quite this way, though. He has scales on his chest, tummy, diaper area, neck, and scalp (including his forehead). The rest of his face is totally clear. His legs are totally clear except for the backs of his knees. The outside of his arms is completely clear, but he has heavy scaling from his armpits down to the inside of his elbows. His hands and feet are clear. He sometimes gets some peeling skin between his toes and fingers, but it's cyclical and not severe. His back was almost completely clear (except right at his tailbone), but it has gotten a little bit dry and scaly with the cold weather (still not nearly so bad as the front of his trunk). The line between the scaly parts and unscaly parts is very clear---it is almost as though he's wearing a shirt, so I can understand the "bathing suit" name.
And when I say "clear", I don't just mean free of scales. The texture is totally different, like "normal" baby skin. I don't moisturize those areas at all and they don't change---his Derm was astonished at this. Initially, we applied Aquaphor from head to toe. But then these areas got smooth and stayed smooth. When it came to reapply the ointment, I found the smooth areas were soft, supple and oily feeling, while the scaly areas were dry and brittle. I figured, why not see what happens if I leave the smooth areas alone? So I have, and those areas are still doing great.
Actually, I'm in a bit of a quandary. I want to give little Peter the very best quality of life I can. It helps that he has a very happy, laid-back personality. It also helps that his older brother and sister love him and accept him as he is and don't seem to really notice his condition. But I can't help but suspect that spreading petroleum products over half his body might be detrimental in the long run. I'm also not crazy about the addition of Lactic Acid. Sure, it helps remove scale, but it does not change the texture of his skin at all and the scale comes back quickly. Is there a more natural way to achieve the same result?