I have two kids with moderate LI, Andrej is 9, Tori is 6. They both have always struggled with scaly scalps. For years we have been doing scalp treatments every 3-4 weeks where they would sleep with a medicated oil on their scalp and we would comb the scale out in the tub the next day with a metal comb. The process took about 2 hours per kid and was torturous for them as it made their scalps super sensitive and it really hurt my back, bending over them for the better part of the day.
Several months ago we started a new lotion for their bodies, it's 10% Acetylcysteine with 5% urea in a Vanicream base. This not only helps remove dead skin but also slows cell production and has been very effective on their skin. So my husband and I (after getting the ok from our doctor) decided to try using it on their scalps and it has been working great! At night after their shower I lift sections of hair and message it into the scalp all over their heads. I am so excited as I haven't had to do a scalp treatment (the old way) in 2 months. My daughter can grow her hair long now (which she always wanted but I couldn't do because it would make the scalp treatments more difficult with long hair.) We had our dermatology appointment today and our doctor at Duke Medical Center said that our kids had the best looking scalps he has ever seen with this disorder. He said he is going to recommend this to all his Ichthyosis patients. Yay!
The only thing to be aware of if you decide to try it is that the lotion does have a nasty sulfurous smell. Our pharmacist adds Lavender oil to it to help mask the smell. We shampoo it out in the morning and the smell is completely gone. I do the treatment every night, unless the scalp is really clear. Then I'll give it a break for a night or two because if it is used too aggressively it can go too deep, making the skin raw. Also, my insurance covers the lotion as the Acetylcysteine is not available over the counter.
If you try it, let me know how it's working for you.
(Mother of Andrej 8/2003 and Tori 3/2006, Lamellar Ichthyosis and Emma 9/2001, unaffected)