ILVEN - Anyone heard of any new treatments?

My daughter was diagnosed around two years of age with ILVEN however it started to become noticiable on her labia when she was two months old.  After numerous dermatoligists and creams.....I fonally found a dermatologist who properly biopsied it and diagnosed it.  However as she aged so too the ILVEN grew.  It covered a large area of the right labia and continued down her right inner thigh.  She has an area on her right kneecap, on her righthand from her thumb up around her index hand, and on the the top of her right ring finger, and a trace amount on her right bottom lip.  After several unsuucceful rounds with lasers we finally opted for total excision (by a plastic surgeon).  Unfortunately they have to cut so far down into the dermis to remove this nasty thing that it has left her with enormous scars in the areas that we treated (the labia, the right thigh, the hand).  We only did the really large, most bothersome areas.  We did the surgery when she was nine.  She is now fourteen.We were told that at puberty she would not continue to develop any new areas.  However, just recently her lower bottom lip has started to itch and become fiercly bothersome.  The lesions have started to protrude above the skin yet but I am terribly worried. I don't think excising it out of her lip would be cosmetically suitable at all.  She is very shy about all her scars and hates when anyone notices them or asks about them.  The scars are very wide.  They have gotten slighly less ugly over time (not as red and angry looking) but they will always be there.  I still think excision was the only solution.  The child would have never had any peace without it.   The results are still tragic to live with.  Has anyone heard of any new treatments in the last couple of years? Any ideas about how to treat this lip area?

Thanks,

MK (Ft. Lauderdale)

[cbarnard]

My son eventually had his ilven excised after laser treatment and unfortunately that was the only thing that helped and that was less than 2 years ago.  He had a third of his scrotum removed that was 'infected' with ilven.  We go back in 3 months and decide is we will try and fix some of his scars.  I pray and hope that his does not come back and i will be praying for a solution for your daughter.  Topical treatments did not work long term with my son due to the location of his ilven.

[tammy4162]

My daughter was diagnosed with ILVEN when she was 3.  This was after 1 year of intense itchy rash on her inner left buttocks and seeing 5 different dermatologist in 3 different States with numerous biopsies.  I am a Family Physician. This has been the most frustrating experience in the world for us.  She is now 7.  We tried all the creams. We tried C02 laser in a dermatologist that specialized in birth marks and it was a horrible experience.  Her ILVEN now is from the top of her buttocks, down the left side, some on labia and upper inner thigh.  Every year it seems to creep down her leg.  We are always hoping that a new treatment will eventually become available. She hardly complains but at times it burns! I have read the few articles that are available.  Most of the literature conflicts itself. I was hopeful when one article said that the ILVEN will usually resolve into adulthood. But 2 dermatologists stated that wasn't true and it only gets worse with puberty.  I am determined as a mother and a physician to hopefully find somewhere a treatment.  My prayers are with you.  

[suzpayne]

Ive had ILVEN since i was 2 months and im 25 now. Ive had alot of luck with Efudex type creams. I also like the walgreens brand Boil Ease for the itching, it kind of numbs it. Good luck! payne_susanna at yahoo