ILVEN

Hello, my six month old son was born with ILVEN.  It starts on the back of his shoulder and goes down his arm to the crease of his arm.  We have been going to a pediatric dermatologist since we first noticed it.  They did a biopsy and it came back as ILVEN.  His dermatologist prescribed dovonex and a steroid cream I apply twice daily.  I have been doing this for 3 months now and I don't see any change at all. Our next appointment is in another 3 months to check it.  I was very upset that he has this at first,  I think I'm beginning to accept it now.  I suppose I'm just looking for other moms with children who have it for someone to talk to.  

[Bhupinder Kaur, MD]

Hello,
I can understand your concern for your child as a parent. ILVEN is a special kind of epidermal naevusand may present like birthmarks. Unfortunately  there is no permanent treatment for ILVEN. Emollients and low potency topical steroids can relieve the itching. Emollients or topical calcipotriol may relieve the dryness. But these are for symptomatic treatment only.

It is very difficult to precisely confirm a diagnosis without examination and investigations and the answer is based on the medical information provided. For exact diagnosis, you are requested to consult your doctor. I sincerely hope that helps. Take care and please do keep me posted on how you are doing.

[AnnaLA]

Dr. Bhupinder Kaur,

My son was diagnosed with ILVEN yesterday, so of course the last 24 hours have involved quite a few google searches on the subject where I've mainly learned to NEVER image google skin disorders, not excactely calming!

I have two questions:

I keep hearing there is no cure for ILVIN, but how come laser isn't brought up more frequently as an alternative since it seems to have high success rates?

Also, I just notices three small papule developing on his left arm (as of now, his ILVIN is limited to right arm and shoulder). I thought it shouldn't cross the midline, am I wrong? Could it be "systematized epidermal nevus" instead? (they didn't do a biopsy).

Thank you!

Anna