I haven't been posting in a looong time. Not that I have anything under control, just that I can't post at work, only read. Nights are crazy at home, so I don't get on the computer much. My Emma has EKH and is just over 2. Our biggest battle right now is her hair. Her scalp is covered in scale. She HATES me touching it...probably why I haven't been able to get much off. Can you tell me exactly what you do and what products are being used? Step by step instructions? I tried putting oil on her scalp, covered it with a shower cap plus another cap, and left that on for about 5 hours. I then put her in the tub, and attempted to comb/pick out the scales. She cried and told me it "really hurts". So, of course I stopped and her hair isn't getting any better. I am afraid the scale will impede hair growth. Can anyone help? Thank you very much!