ILVEN Treatment

[cbarnard]

My 2 year old son has ILVEN in the worst place possible (scrotum).  We have seen a dermatologist and has now referred us a urologist to discuss removal of the lesions.  We are limited to what kind on topical sollutions we can use.  Does anyone have any home remedies or solutions to help relieve his itching?  A day does not go by that he does not complain about it hurting.HELP!!!!

[dannymack]

Hi, i suffer with ILVEN on my nose! i am 31 and male.

I have found that using hydracortesone (not sure how to spell it!) once a day really helps with itching and redness.

I have tried loads of other ointments but that seems to be the only one that helps.

I have also tried pulse laser and carbon dioxide laser treatments which worked for a few months then it came back...

I have been told not to use the hydro cream for long periods as its a steroid and can have long term effects on the skin, but at the moment i'm willing to take the risk!

I hope this helps a bit.

all the best

dan

[gsalaz01]

I was born with ilven on a large part of my body and have had success with a pulsed CO2 laser.  The treatments were done by Dr. Jerome Garden in Chicago, IL and by Dr. William Ramsdell in Austin, TX.  I did however have to have several treatments.  But, I can easily say my ilven in at least 90% better.  Prior to having the laser treatments done, I used to  use a compound cream prescribed the doctors in Chicago of hydrocortisone, salicylic, menthol, and phenol.  Now, I sometimes use hydrocortisone cream.

I hope this helps
Grace

[Ann0823]

Thank you so much.  I will go check out the pulsed CO2 laser with our dermatolgist. I am 48 and am very used to my "skin issues."  For my 10 year old daughter, however, it is a whole different story.  I am willing to give most anything a try.
Thanks,
Ann

[js826]

Hello everyone.  I am a 28 year old female.  I have ILVEN which goes from my left toe all the way up my left leg to the bottom of my buttocks.  Vitamin E oils have helped - a lot, but it gets kind of expensive due to the large area I need to cover.  Sometimes I use baby oil or cocoa butter too, it seems like the more hydrated I keep the lesions, the less itching.  Also, I do pretty well, when my legs have been exposed to lots of sun.  gsalaz01, thanks so much for the names of the Dr's, I have been wondering if anyone in the country had been working on this condition.  

[Monica5786]

Hi everyone, I have a 15 month old girl. She also has Ilven.It started as a small spot on her elbow and has spread all up and down her right arm, on  the right side of her neck, and up and down the right side of her back. I don't think that at this point she knows it's there but it does get worse form time to time. My heart is so broken.I feel as if I did this to her. My doc has said there is no treatment but maybe laser. So do I leave her with these ugly marks all over her or get her laser surgery and have scars from that. I don't know what to do.

[Mick888]

Hi all,

I have suffered from Ilven for many 15 years this only come on when i was 15 after many doctors and creams at a large expense i finally got a doctor who did not now what it was. Test done then it come out as Ilven. My area is Scrotem & inner leg. I have had C02 laser several times plus another laser i could not remember. About 7 years ago i got some cut out and other laser done. cutting the ilven out has worked and has not come back but i still have a large amount in the groin area which is really hard to keep under control. I had to change to Boxer short & apply Vaseline to keep it moist when it drys it is so itchy. I hope this might help i feel your pain. it is so annoying.

Thanks

Michael

[gsalaz01]

Hi Monica,

In terms of treating your daughter with a laser for her ilven.  The pulse co2 laser left my skin better than it was, but a bit lighter.  I had it done in my bikini area.  It is ideal for very fair caucasian skin since it lightens the skin.  I am mexican and a bit darker.  But, I can honestly say my bikini area was already scarred by the ilven and it looks tons better.  There is a promising laser out there for darker skin called a fractional co2 laser...I don't know however if it works for ilven.  This is something your dermatologist can help you with. Hope this helps.  Grace

[heidi1111]

Does anyone know what the dangers of pulsed co2 laser are ? Any idea of the age a child should wait until to have this done ?

[dani702]

i have ilven in like the worst most embarising place...my left breast! im soo self consious about it and i hate it so much! for years i went having no idea what it was but then i finaly went to a dermatolgist who did a biopsy and thats how i found out. mine does not itch though...i mean very rarley it might but not really...my dermatolgist tried a few things to remove it that never really worked we were going to try the laser thing but insure wouldnt cover it since they consider it just to be cosmetic. im felmale and 17 and its horrible/: