Ok, so I thought I was on top of things and that his face and scalp were just harder to deal with. I haven't changed anything in my routine and now his arms and legs look awful! Everything is building up so fast I cant seem to keep up. Is this just how it works and there is nothing you can do about it? Am I not doing enough for him?
So many people talk about how the scales just fall off with certain products they use, I have yet to see that happen with anything i have used.
I would never ask this for myself but I will do anything for my son, so... is there a way to get financial help? Will the government help at all? I would love to try all kinds of things on kenny but there is no way I can afford to just try things, hope they work and if they don't, buy something else.
I am really confused, nervous, scared. I thought if you stuck with your routine the scales wouldn't build up as thick. We were doing good, finally got rid of that collodion layer and now it's starting all over.
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.