We went on vacation to the Florida Keys a few weeks ago and I guess I had the idea that the sun would be really healing for Kenny but the complete opposite happened. He got progressively worse while we were there. It was hard because he absolutely loves being outside so I kept him covered as much as I could and then put sun block on him because we were all burning so easily. The blessing was we were right on the ocean so the breeze kept him nice and cool he never overheated but the sand really dried him out.
So, what do you do in a situation like that. I felt like it was a "catch 22" no matter what I did his skin suffered. Leave him out in the sun without sunblock and he burns or put sunblock on and it totally dries him out more! I guess I am trying to figure out what happened because whatever did, set him back so much! He hasn't had the real dark patches on his arms, legs and face for months. He was doing so good and now it's like it was after birth with the thick, dark patches everywhere and they are taking forever to come off.
A few days ago I put a lactic acid compound on him like I always have and he started screaming and huge red whelts were all over his body. That has never happened. After I rinsed him off in the bath he calmed down a little but he really didn't want me to touch him. I am so confused as to why it set him back so much. Has anyone else experienced this? I would love to know how to handle this the next time.
My name is Candace. My son, kenny was born May 19, 2009 diagnosed with Lamellar Ichthyosis. My daughter Chloe was born June 4, 2011 unaffected.