Aa
Aa
A
A
A
Close
Avatar universal

ILVEN Treatment

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!!!!
21 Responses
Sort by: Helpful Oldest Newest
Avatar universal
Hello,

My husband has had 5 different ILVEN his entire life. And in the past 2-3 years the itch had gotten worse and worse. To the point where he would spend all night scratching uncontrollably and wouldn't sleep. After much research I found this blog which lead me to contact Dr. Garden in Chicago, he lead me to another doctor in the University of Miami (unfortunately he couldn't help because he only did lasers and in my husbands case it would be a waste of time) but he did point us in the right direction. He advised us to go see Dr. Gil Yosipovitch who is a ITCH specialist. Finally I was getting somewhere. Dr. Yosipovitch told us he has treated a few (much more than any other Dermatologist we've seen) patients with ILVEN's. He told us to first try a cream he had formulated, I was highly skeptical because we've tried hundreds of creams and none have worked for more than 2 weeks. He advised us that if the cream didn't work then his next step would be to try botox in the area where the ILVEN is located in. Fortunately, we never had to try the Botox method because the cream we MAGICAL!!!! For the first time in our entire relationship my husband was able to sleep an entire night. It has been a year later and the cream still works, I still can't believe it. I have no idea what the cream is but my best guess is that it is some kind of local anesthetic that numbs the ILVEN. He usually puts on the cream right before bed and it will last 12-16 hours. The price is the cheapest of any other cream we've bought before too, for 60$ we get a supply that last about 3 months, to be honest I would probably pay a million times more for the relief it has brought him. I would recommend for anyone with a ILVEN to at least give Dr. Gil Yosipovitch at the University of Miami a call to see if he can help.

Hope this helps.
Helpful - 0
Avatar universal
I agree with doing it at a younger age, but try telling that to my 5 year old granddaughter's dermatologist.  They won't hear of it and the poor kid suffers in the heat.  Her mother and I are beyond disgusted with the lack of concern doctors seem to have for this highly uncomfortable, unsightly "disease", allowing it to expand to too close for comfort to her vaginal area.  Unfortunately my daughter and granddaughter are on State insurance so they are limited to access of care.  If they would just excise it she won't have to suffer all her life with it!
Helpful - 0
Avatar universal
I too am glad to have come across this site. I have had ILVEN classic, from my left buttock down the back of my thigh to my knee, and only a few spots down the calf.  I don't remember when it actually showed up, but I didn't really notice it until I was about 14, and it was a faint line just on my thigh, never inflammed, scabbed or itchy until i was about 18, a doctor did a biopsy and just called it a "linear nevus". As time went on it seemed to spread upward and downward, and very very itchy and inflamed during my monthy cycle.  I had it lasered about 10 years ago, and for a while it stopped the inflammation but did nothing for the appearance.  Sun seemed to make it angry.  I too have tried many creams and ointments, and at one point I slathered it for a couple of weeks with a wart ointment.  It blistered up something fierce, then it seemed to remain dormant for quite a while, and is now giving me problems again, so I went googling and wound up here.  I am 43 and at this point in my life, I'd just as soon have the thing cut out, no matter the scar.  It's easier to explain a scar than this disgusting rash. I would recommend it for younger kids, especially with ballooning, because it will get rid of it for sure, and the scar will fade much easier than if they wait until they're older. Good luck to all of you!
Helpful - 0
Avatar universal
Iam so happy I found this sight. I have had Ilven syndrome since infancy, and am now 24 yrs of age. I have recently been having a hard time maintaining it, and will soon be going to The University of Washington to find out more options for me. I have used Eucerine the cream for 15 years now, and can, and will say it has been wonderful for when iam in pain. As of now iam miserable! I can not seem to get comfortable know matter what I do, and am also losing sleep. I also now have a 11 week old baby, and am praying she does not show up with this, as it is painful, and Dr.'s Are unsure what to do with it for a cure. I hope for those of you with your children who have gotten this awful disease can find some comfort, and be seen to get it taken care of.
Helpful - 0
Avatar universal
my 13 year old daugher has had ilven since we came remember. it goes from her 3rd and 4th toe to the top of her thigh and the back of her thigh.  since she is now a teen and where shorts that are shorter than before and she also rolls in her foot, we think it maybe her hiding the ilven. also she hates swimming with friends in swim suits. the sun dries it out and we are now using a topical cream. i know she wants it gone what it the best procedure? is it cutting it out or laser surgury? we will do whatever. if you can post up info on both that would be great. she wants it gone. also put up how much pain it will put on her. will she be unable to feel it? any info all of it.
Helpful - 0
Avatar universal
I am 25 and had ilven since I was 2 months. Ive had  alot of luck with Efudex type creams. and for itching I like this Walgreens brand stuff called Boil Ease. its not really for itching but more fore pain and it seems to kind of numb it. Nothing for itching has ever helped me. Any questions email me at payne_susanna***@****
Helpful - 0
Avatar universal
My son  has had ILVEN from his buttock to his big toe since he was a toddler. I was actually told that it only occurs on the leg and am bemused to find all of these postings about other areas.
Anyway, he is now 11 and is currently having aser treatment under the care of Dr Neil Walker at The Lister Hospital in London. He has test patched a number of different lasers and the most successful and in fact the least problematic afterwards because it doesn't actually cut the affected skin out and results in very minmal scarring is the pulse laser. Treatment seems to result in almost instant relief from itching and 12 months later the problem has not reoccured. It is carried out under local anaesthetic in small areas at a time and he has had little or no discomfort afterwards. Definitely worth doing as the itching used to drive my son totally nuts!
Helpful - 0
Avatar universal
My seven year old daughter has suffered from ILVEN since she was three.  I just read your post and was wondering if you tried the laser and if so was it successful?  We also use Cetaphyl and Aquaphor but she is constantly itching and it disrupts her sleep. Some mornings are really hard because she is so tired but yet still has to go to school.  I have been researching and there is not much out there.  Any advice?
Helpful - 0
Avatar universal
my 3 year old daughter has Ilven, it first appared on her knee and now she has it on both sides of her "diper" area, in the top part of her butt crack, a patch on her lower back and it looks like some might be on her lip but its not noticable. My question is other than surgery and steroids ( we tried that and she grew hair!)  what can help, right now i just try and keep it mosit, she often says that its hot is that normal? I know it itches but the hot threw me off? also it seems when her allergies are bothering her the ilven bothers her more as well. baby oil seems to work the best so far but just curisos if there was anything else and is there any chance that as she gets older will the itching lessen or go away? gb.***@**** Thank!
Helpful - 0
Avatar universal
Hi All
My 6 yr old daughter has suffered from this for 2 yrs now.  We keep it mosturized (cetaphyl lotion and aquaphor).  She is itching constantly and it is still spreading!  I talked to the dermatologist about some options and the co2 laser therapy was mentioned.  They said they would have to put her under anesthesia so I have put it off but I am seriously considering it at this point because she is miserable. She has also been on steriod creme but I don't want her to live on that for the rest of her life.  Just wondering what you have tried and if anything worked for you as of yet.  

Anyone out there that has had the co2 laser treatment that can tell us if it is worth it?  How painful is the procedure?  How severe is the scar?
Helpful - 0
Avatar universal
I have lived with ILVEN since I can remember.  I went to specialist after specialist when I was little, and we finally went to Chicago where I was basically a test case in the pediatric dermatology department.  I still have 2 small spots that itch occasionally, but I try to leave it alone.  The condition covered near my scrotum and most of my groin.  We used hydrocortisone cream to stop the itching (so I wouldn't scratch) but the itch never fully went away.  I did switch to boxer underwear so it wouldn't rub against the ilven.  Eventually I had the affected skin cut out which has worked perfectly except for a scar.  Considering it was on my groin, and very few people would ever see it I was completely accepting of a scar.  My family went to 2 surgeons.  The first surgeon suggested we balloon the skin around the area affected so then we could "connect good skin with good skin", and claimed it would have a better chance of results.  The second surgeon (who we paid) simply cut out the major areas (most in the first surgery and more in the second), and then sewed the skin together.  The downfall of this method was I literally had to walk hunched over for a month, but I preferred it compared to the balloons because the balloons you have to blow up slowly and tend to on a daily basis.  The balloons also can provide chances of infections which would prolong a surgery.

Personally after having gone through this I would suggest a surgery option, but I can't say that I have tried the laser option.  I know that I definitely would not want to keep putting cream on ILVEN.  The day after the plastic surgery I could literally feel it did not itch at all which made me extremely excited.  
Helpful - 0
Avatar universal
I have lived with ILVEN since I can remember.  I went to specialist after specialist when I was little, and we finally went to Chicago where I was basically a test case in the pediatric dermatology department.  I still have 2 small spots that itch occasionally, but I try to leave it alone.  The condition covered near my scrotum and most of my groin.  We used hydrocortisone cream to stop the itching (so I wouldn't scratch) but the itch never fully went away.  I did switch to boxer underwear so it wouldn't rub against the ilven.  Eventually I had the affected skin cut out which has worked perfectly except for a scar.  Considering it was on my groin, and very few people would ever see it I was completely accepting of a scar.  My family went to 2 surgeons.  The first surgeon suggested we balloon the skin around the area affected so then we could "connect good skin with good skin", and claimed it would have a better chance of results.  The second surgeon (who we paid) simply cut out the major areas (most in the first surgery and more in the second), and then sewed the skin together.  The downfall of this method was I literally had to walk hunched over for a month, but I preferred it compared to the balloons because the balloons you have to blow up slowly and tend to on a daily basis.  The balloons also can provide chances of infections which would prolong a surgery.

Personally after having gone through this I would suggest a surgery option, but I can't say that I have tried the laser option.  I know that I definitely would not want to keep putting cream on ILVEN.  The day after the plastic surgery I could literally feel it did not itch at all which made me extremely excited.  
Helpful - 0
Avatar universal
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/:
Helpful - 0
Avatar universal
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 ?
Helpful - 0
Avatar universal
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
Helpful - 0
Avatar universal
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
Helpful - 0
Avatar universal
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.
Helpful - 0
Avatar universal
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.  
Helpful - 0
Avatar universal
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
Helpful - 0
Avatar universal
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
Helpful - 0
Avatar universal
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
Helpful - 0
Have an Answer?

You are reading content posted in the Dermatology Community

Top Dermatology Answerers
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Popular Resources
Learn to identify and prevent bites from summer’s most common pests.
Doctors argue for legislation to curb this dangerous teen trend in the latest Missouri Medicine report.
10 ways to keep your skin healthy all winter long
How to get rid of lumpy fat on your arms, hips, thighs and bottom
Diet “do’s” and “don’ts” for healthy, radiant skin.
Images of rashes caused by common skin conditions