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?
MK (Ft. Lauderdale)