Daughter diagnosed with ILVEN

[ShariMc]

My 8 year old daughter has recently been diagnosed with ILVEN by her dermatologist, based on a visual exam vs. a biopsy. I'm wondering if any ilven sufferers have the same "look" to their lesions as my daughter.  Her condition began with a red scaly rash and now appears as a smooth hypo-pigmented patch on her upper left thigh, about 6 inches long.  She has a small dot (hypo-pigmented) on her high upper thigh, close to her crotch, and another similar patch the size of a quarter on her calf.  When the lesion was red and inflamed, she itched constantly, now she says she has no itching or pain. The doctor prescribed a mild steroid cream.  Does anyone have a similar presentation??  Thanks to all.

[lizzann]

Iam now 24 years old, and have had Ilven Syndrome since infancy. I have it on the right side of my body. It starts from my bottock all the way down to my foot. It is, and can be very painful. I have used Bagbalm, Aquaphor, vasaline, steroid creams, and have had some C02 laser done as well. Which did work in some little areas. The steroid creams did bother me. It made the scar to thin which caused it to crack, and bleed. Very painful btw. :( but I can say I have used Eucerine Moisturizing Cream for the last 15 years! Yes 15 long years. It has done wonders for the itchy, dryness, and as well comfort my pain.
     I will soon be visiting The University of Washington to try more options for me. Now that the Eucerine does no longer work for my pain. I truly do feel for your daughter, and wish the best for you both. I recently discovered this web site, and am thankful I did, and will say I did cry when I read what everyone else had to say. I honestly thought I was the only one out there in pain, and that there would be no help for me. Now that I have received my referral to UW, and have found this sight. Iam looking up, and hoping here soon I can have this scar removed, and go on with my life feeling like a normal person. If you have any questions PLEASE feel free to ask! :)

[ShariMc]

Thank you so much for your quick response!  I'm continuing my research and I think what you're describing is certainly closer to her what her symptoms indicate...  I'm going to ask the doc about this and hope that we can figure it out. Thanks again, maatson.  This is a great website, great members :)

[maatson]

Lichen striatus is a look alike but would not itch. ILIVEN is typically on the left side with itch.But the respose to treatment is not so good for ILIVEN as in your daughter. Both these conditions occur along 'lines of blaschko'. I wonder whether this is an overlap syndrome (Good for the child).
Best wishes.