Who/what is ILVEN, you ask? It’s the answer to that question that Matt and I have gotten so sick of: “What’s wrong with his chin?“ If you know Sam, then you know that he’s had this patch on his chin, and, for the last 5 months we’ve been asked that very question by everyone who first meets him. I can understand why they ask, since most people think he’s fallen and scraped up his face. It’s just that it used to be his big, beautiful, brown eyes that got your attention. Now it’s apparently the chin. (Sorry to rant…it’s just gotten SO old by now…)
Anyway, to give a “brief” history to it, Sam has had a scaly, red, flaky, etc. patch of skin on the right side of his chin that extends to the side of his face and under his chin. We’ve battled it for months, following all kinds of advice from caring friends, family, and doctors for treating this patch of what seemed like eczema. (I don’t want that to be taken the wrong way. Everyone that tried to help had very good intentions. It just became a topic that I was very tired of discussing, mainly with every stranger on the street.) So, today we find out that it isn’t eczema at all, it’s ILVEN.
Get ready, I’m sure this could be a long entry, but since so many have wondered what’s wrong with his chin, now’s my chance to finally have an answer. Plus, it’s pretty interesting and I figure you might be curious, too.
So, ILVEN stands for Inflammatory Linear Verrucous Epidermal Nevus. It’s manifested in a pattern referred to as Blashchko’s Lines, and follows a linear pattern. Anyway, ILVEN is a lot like a mole or birthmark. It’s just not nearly as common. In fact, it seems pretty rare. It’s even more unlikely to be on the face. I think it’s more common to be found on the torso, arms or legs and in larger patches. It’s also often mistaken for eczema or psoriasis. (And Sam does have a history of eczema in addition to this, so I can see why it was so easily misunderstood for so long). It just “pops up” within the first 5 years of life. It doesn’t generally cross midline (as Sam’s stops halfway acrosss his chin). It is not hereditary, so we don’t have to worry about him passing it on or us having more kids with it. It’s also not contagious (although when we answer that popular question of “What’s wrong with his chin?” with “Oh, it’s ILVEN” we’ll see how many people are anxious to get one of his oh-so-popular slobbery kisses!) The patch that he has could possibly get larger (although I’m hopeful that with the proper treatment it won’t) but it won’t show up on other parts of his body. ILVEN can go away later in life, sometimes along with the hormonal changes in puberty. For Sam it is also itchy, like eczema. It’s also more commonly found in girls.
The only way to further investigate his case is with a skin biopsy, but since we know Protopic has worked well, the Dr. is not recommending it at this time. By the way, the doctor that he went to is the top Pediatric Dermatologist for Cardinal Glennon. She also teaches at SLU. Apparently she was all smiles when she determined what this was and eagerly showed it to several medical students who were interested in seeing such a case. Thus, the medical marvel. He’s even got the experts intrigued.
I should also note that all of this information isn’t necessarily verbatim what the doctor told us, it’s just our best understanding of it. We’re still learning about it, and I think a lot of doctors are too. We’re definitely no authority on the subject!
So, the bad news is that our poor guy just has to deal with it. Unlike eczema, there’s really no getting rid of it. The good news is, in all of the “eczema” treatment we went through, we’ve found that it responds well to Protopic, and the pediatric dermatologist OKed our use of it indefinitely. So, we can keep it in check with medicine as needed, zinc oxide, the continued use of Cetaphil, and special soap for his bath. (Oh, how I’ll miss that great Johnson’s smell!)
Sam
Right now I’m avioding the urge to go online and do a bunch of research. I feel like I know what I need to know right now. But, feel free to ask me anything I didn’t cover or add a comment on this post. And if I ever do look it up online, maybe I’ll post a link or something. For now, I’ll post the best/worst picture of Sam’s ILVEN that we’ve got, taken back in March by Aunt Chris when it was pretty bad. (Chris, the doctor found that picture most helpful in diagnosing, so we’re very grateful for you and your camera!)
So, now I’ve got an answer to that constant question, but I’ve also got a new worry. It’s a relief to know what it is, and to know that we can keep using what works. However, a mom’s got to worry about this kind of thing. My heart sank when I realized how long he may deal with it. Here I’d been hoping that we would be finding a better treatment for his eczema, not a new problem. Naturally, his preschool friends are going to be full of questions. That I can handle. It’s the elementary and middle-school years that I worry about. Kids can be so mean. But, I have to keep it all in perspective: of all of the bad things out there, it could be so much worse. I figure we’ll just have to wait and see. I’m hopeful that now that we know what it is, we can treat it better and keep it only mildly noticeable. With any luck “that question” will stop and we’ll soon be hearing all of those compliments on his beautiful brown eyes again. I sure love ‘em!
I still think the beautiful brown eyes are his most eye-catching feature. What a doll. I’m glad you are finding out more about this curious chin “rash” (if you will). I pray for his comfort and healing!
By: Katrina on July 8, 2008
at 5:03 pm
There’s a little medical misinformation there! While every dermatologist has at least 20 cases of this on their books, the average general practitioner isn’t familiar with it.
I have a toddler so have heaps of tips on how to deal with this condition. Feel free to e-mail me! I’m in Western Australia but some topically applied creams are the same as what they are in the US and we’re right up on the surgeries.
It does cross the mid-line, and when on the face it almost always does to some extent. The good news is that when it’s on the face, as the skin is thin there, it does not get as thick as it does on the rest of the body.
Stay positive! Your son is gorgeous and certainly not alone with this condition (we have two EN kids in our extended family). Use the word “birthmark” when talking about it around your son and other kids. When he’s old enough you can give him the Latin but until then, the word birthmark normalizes it and other kids just accept that as something familiar to them.
Cheers,
Andrea
By: Andrea on July 8, 2008
at 5:27 pm
I appreciate Andrea for finding me! I appreciate the clarifications, too. He just went to the doctor today, so the whole topic is new to us. I did make a few adjustments based upon the information. We feel pretty comfortable with our treatment plan, but if I ever have questions, I know who I can ask.
I hope it doesn’t seem like I’m too down about the whole thing. I’m really not! I was really just trying to give everyone the same information that I have, since a lot of our friends and family have been wondering about it themselves. It’s been a big puzzle to all of us for some time. Now I’m hoping that we can all wonder a little less and he can itch a little less, too.
By: Nikki on July 8, 2008
at 8:30 pm
I’m glad my picture helped the doctor and it is good to know more about the real cause. Bring on those slobbery kisses!!
By: Aunt Chris on July 9, 2008
at 1:21 am
Hello, I came across your blog while doing some research on ILVEN myself.
I’m a 17 year-old girl and I was born with the ILVEN rash on the back of my leg, so even though it’s not as conspicuous as on the face, I still grew up with people asking questions about it. Andrea’s got it right, tell your son it’s a birthmark (and even that it makes him special!). I always felt a little proud of mine simply because my parents had told me it was very rare (and that the doctor who looked at it found it exciting!), and I felt that it really did make me special.
But anyway, my experience with it has been pretty good, and hopefully it’ll be fine for your son as well. A little tidbit that may help you (even though not all cases are the same) is that the rash might become more pronounced and irritable in cold, dry weather, so keep an eye on it in the winter.
I wish I could give you good tips on keeping it from itching, but mine only itches once in a while so I’ve never really experimented. If you think you’d benefit from hearing the continued ramblings of a girl who’s been growing up with ILVEN, you’re more than welcome to email me. I don’t understand the majority of the information out there myself, so I realize how valuable a first-hand account can be.
Glad to have found you!
- Casey
By: Casey on July 10, 2008
at 12:36 am
Casey – my 17 year old son also has ilven. The doctors in our area have never seen this and we are currently looking for a specialist. His affected area on his left inner thigh has changed significantly over the years specifically from 2004 when it was just a slightly raised discolored area to now when it is a very raised very bumpy almost wart like area. Did you notice yours changing as you became a teenager?
By: Kristie on June 8, 2009
at 11:07 am
My daughter has ILVEN now for 12 years. She has had it since she was almost one. Now, she is 13 and it is quite extensive. We tried the topical creams and such at first, but they never helped and only made her condition worse. She started developing other problems like hypothyroidism, and I got scared because other than the ILVEN she didn’t have any other symptoms or problems before the treatment, so we stopped treatment. The doctor, Dr. Mancini at Children’s Memorial in Chicago, is where we went for a couple of years. When he told me that they didn’t have any answers, and everything was experimental (this is 10+ years ago,) and it seemed like my daughter was getting worse, I stopped treatment altogether. When she was going to him not only did she develop hypothyroidism (which she doesn’t have now, she only had it while she was being treated for the ILVEN) her ILVEN seemed to grow, and become more irritated, etc. Altogether, it seemed like the treatments were making it all worse. I don’t want to scare you in any way…everyone is different, and I certainly don’t know anything. I am still looking for answers. I belong to a support group which can be found on Careplace.com There are other places too on the web. I am SOOOOOOOOO happy for them!! They help so much. Also, you can hear other people’s experiences. Some which are very good from the different types of treatments out there now. That is where we are now with all of this. I am hoping to find some new information, some new research, some new treatments, etc., that can eventually help her. Right now, like I said, it is extensive. However, it doesn’t bother her other than cosmetically (and that is only sometimes.) She has NEVER been teased in anyway over it too. It seems like people, even kids her age, are curious about it, but they are not mean about it. She will be in 8th grade next year. By the way, she has the best immune system in our household. She RARELY gets sick, and if she does get sick, she doesn’t have the germ for long. I actually think that ILVEN has helped her immune system in a very good positive way. Well, I do wish you all of the best, and that your experiences will benefit not only him but others as well. I am very appreciative of your website. It is great to have rare things in common with others. It is very hard when you feel like you are by yourself with the “unknown,” Sincerely, Lynda…
By: Lynda on July 16, 2008
at 9:08 pm
my daughter is 30 now and has suffered with ilven since she was 9 months old. It is on her left side in the groin area. She has tried creams and laser surgery to no avail. A dr in NYC has recommended enbrel injections. Is there anyone out there that has tried that? ILVEN is a terrible burden to bear but it is comforting to know that there is support out there!
By: maryh on July 24, 2008
at 7:50 pm
I am so glad I have found these letters! I can only too well understand the frustration when well meaning friends and relatives advise me on the latest remedies for either psoriasis and ezcema and think I am exagerating my fears regarding my sons future (he is now three) when he goes to school. Not wanting to sound too dramatic I worry myself to the point of tears just imagining him being bullied. He is just such an adorable, gorgeous, fun loving (and very mischievous) child and I never want anyone to take the smile from his face by being mean for something he can’t help.He has been diagnosed with ILVEN and we go to Great Ormond Street Hospital in London for a twice yearly review. My son also has a similar rash as Sam on half his chin and has also has extensive marks on both arm and a line running halfway down his legs. I have also researched some alternative medicines to make sure I am doing everything possible to help him in the hope that a combination of conventional and alternative medicines might give him the best chance of normal skin in the future. A cranial therapist I see advised me to give a teaspoon of flax oil every night and she can detect any mineral deficiences so she gives advice as and when I can supplement his diet. Thank you for the advice about calling the redness a birthmark.
I would be very grateful for any other advice. I don’t feel I am handling this alone now. Thank you so much.
By: Karen Skinner on July 29, 2008
at 4:22 pm
THank you for your site- My 3yr. daughter has ilven.
At first i thought it was diaper rash since it is on her the left side of her bum. plus the long white line going down her leg with a cluster at her ankle. she’s had it since she was 2 months old.
I have been trying to finds other like us, and right now i am crying because i thought we were alone. Thanks Karen for your information. And fyi, califonia baby’s body wash smells great and doesnot dry her out.
Thank you all so much
By: Rebecca on January 5, 2009
at 5:15 pm
My 9 year old daughter has ILVEN extensively down the entire left side of her body, following the lines of Blaschko. From what I’ve been told, ILVEN is the result of stem cells in the skin not having the right “program” – in other words, the cells don’t receive the message to slough off. New skin cells form, but the old ones won’t “let go” and essentially stayed glued to the new skin cells. I was told long ago that ILVEN might be helped one day by the knowledge gained in stem cell research. I’m hoping that is the case. For our daughter, Protopic helped smoothe it out some, but we discontinued use after concerns were raised about long-term use of the product, esp. in an off-label manner over large areas of the body. However, my daughter has received pulsed-dye laser treatments for the ILVEN since infancy. Lasers don’t “get rid of” ILVEN, but have helped reduce inflammation, reduce the pigmentation of the lesions, and smooth the ILVEN out quite a bit making it less raised and less “warty” to the touch. Realize, though, that lasers can be dangerous in the wrong hands. I researched doctors extensively until I found someone world-renowned in the field of dermatologic laser surgery who also happened to have had at least one prior patient with ILVEN. Luckily, my daughter has never been teased about the ILVEN, although she does receive the occasional question about what it is, and we’ve taught her to be straight-forward about it. I know as she is getting older, it bothers her more and, of course, she wishes she did not have ILVEN. We are very sympathetic to her feelings, but also try to help her keep things in perspective, help her to recognize that her wonderful spirit and talents are what define her, not the ILVEN. At the same time, we want her to know that she should not try to hide the ILVEN or feel embarrassed about it. Parenting is hard enough and with such an emphasis on physical perfection in our society, we worry even more about the social impact ILVEN will have. I wish you and your beautiful children all the best.
By: Sharon on February 2, 2009
at 8:57 am
I have only just come across your website. I also suffer from ILVEN on the right hand side of my face, near my jaw line. I didn’t develop it until I was 16 so it’s a sort of adult birthmark. It wasn’t diagnosed until I was 28 – maybe the doctors in the UK just aren’t trained enough. Anyway, i was told to go away and that there was nothing the doctors could do. They recommended hyrocortisone which is a steroid to stop the itching but i don’t use this anymore. As it is on my face, i find it very uncomfortable, always covering it with my hair. I have tried everything but nothing really stops the itching or reduces it. If anyone has any tried and tested remedies for ILVEN on the face, please let me know. Thanks
By: Anon on February 12, 2009
at 3:23 pm
I hope you don’t mind Nikki but I just checked into your website to see if anyone has reverted re ILVEN treatments and I note that Rebecca has posted a comment. I wonder if you would mind giving her my email address so she can contact me if she wants to. I am always trying new treatments out -in fact I am trying some capsules and cream from America which I started today in the hope that something will reduce the redness. I have a feeling that something will work and I won’t give up looking! It is awful feeling alone as the condition is so rare but if a few of us get together and share our experiences re our respective specialist treatments maybe we will get somewhere. I am not very ‘techie’ when it comes to computers so I don’t know if you know my email address. If not, it is folski@hotmail.com and I live in Jersey, British Channel Islands as opposed to the Channel Islands near California. Many thanks for your help and I am sorry to intrude on your website. Kind regards Karen
By: Karen Skinner on February 12, 2009
at 3:26 pm
I was diagnosed with Ilven on my face when I was 28 years old. It’s a small mark on the right hand side of may face, about the size of a 2 pence coin, just above my jaw. My Ilven didn’t appear on my lower cheek until i was 16 years old (I had a very small mark near the corner of my right eye which i now know is also part of my birthmark). I went from doctor to doctor who told me that it was eczema or didn’t have a clue. I have to be honest and say that I find the sight of my birthmark very uncomfortable but also the itching. I am lucky that I can hide it with my hair most of the time and use concealer but it’s still very embarassing when people ask me what it is. Any ideas to reduce the redness and control the itching are greatly appreciated. I will ask my doctor for protopic as this has never been offered to me.
By: sarah on February 14, 2009
at 2:24 pm
my 20 month old grandaughter has ilven on her rt arm. has showed up about 6months aggoing to doctor monday 30th .
would like to talk to anyone that has delt with this.
Her father is scared to death her mom is severly disabled with MS, he has just had to put her in a home needs 24/7 care. and he works full time and has 2 girls 9yrs and the almost 2yr .
He is in California,
thanks for any imfo
Marian
By: Marian on March 29, 2009
at 12:19 am
This week my son was diagnosed with ILVEN on his right arm and hand (top down). Since he’s gotten the marks only three weeks ago, we have no idea whether it will grow or not. I couldn’t find any information about this. What is your experience?
As Sasha is only one years old, he cannot tell us whether it itches or hurts. But as he doesn’t like bathing anymore (which was his number one pleasure of the day) I do think it hurts, at least when in water. On the other hand, no one mentions that ILVEN hurts, I only read about itching. Maybe I am interpreting my sons behavior the wrong way.
Anyhow, I am curious about the special soap. What do you use? Does it help?
Furthermore, Sasha’s ‘birthmarks’ look like they need care (red, thick and dry and maybe hurting). I am inclined to use something greasy, but none of the people with ILVEN on your website mention something that really works. Or did I miss something?
Anyhow, whatever answer you can give, your site was more helpful than our visit to the hospital. It was almost shameful… after making a couple of pictures, the only thing they said was: it is ILVEN, we can’t help you, come back in six months, oh and if you want, we can make a biopsy. There you go.
So thank you for this site. I will visit it regularly to see if there are anwers, tips to copy or tips to share.
Carlijne, Netherlands
By: Carlijne on April 5, 2009
at 1:50 pm
My daughter is now almost 15 and has been living with ILVEN on several places on her body (back of her neck, arm pits, arms, stomach, hands, groin area, knees and feet). Her condition spread quite quickly from birth to around 7 or 8 yrs old and then sort of remained static. The lesions in some areas disappeared leaving a pale white pigmentation where they used to be.
We had hoped that her condition would improve during puberty as some studies indicated but alas it hasn’t.
I came across an article a few years back on a study in Turkey in which they used carbon dioxide laser therapy to treat ILVEN.
I can’t seem to find the article or any reference to it and I was wondering if anybody else has come across something similar ?
Also, is there anybody who knows of a support group in South Africa ?
I would love for my daughter to chat or even meet with someone else who has ILVEN so that she knows that she is not alone in this world with this condition.
She’s a beatiful girl and has weathered her special condition well but I know that beneath the brave front, it does bother her and she still gets embarassed when questioned about it.
By: Mike on April 24, 2009
at 7:34 am
I was just wondering if everyone’s ILVEN grows, or does it stay the same? With my daughter, her has grown (covered more areas,) quite a lot over the years…….Also, does anyone who has ILVEN have any other medical problems? Also, does anyone know of anyone who is researching ILVEN?
By: Lynda on May 6, 2009
at 11:45 am
Lynda – I thought the same about my son’s ILVEN however was advised by the hospital that it had always been there. I also thought it flared up into new areas and subsided slightly in others. It is still a mystery that only time will tell. I would say however that the psoriasis and excema on my son is hardly visible after a trip to sunny Florida although his tan is patchy. Although not a medical problem I have been told by his dentist that his teeth are very weak (she has noticed that people with skin problems often have this) and she brushes liquid floride on them every three months and I do not rinse his teeth after toothpaste to keep some flouride on at night.
With reference to research, I have been told that as ILVEN is so rare very little research is being done on it. I just go on the internet to see if anything has been discovered and try new things to get attempt to allieviate the problems with the psoriasis.
Hope this helps. If you want to contact me direct, my email is folski@hotmail.com. As you will see from the above, Rebecca and I keep in contact which is great so if one of us stumbles across anything which helps, we can share the knowledge.
By: Karen on May 7, 2009
at 4:27 am
HI!!! Wow, this is nice to read comments by people who have or have children who have ILVENS. I am 45 and have had ILVEN since I was about 6 weeks old. When my doctor discovered what it was way back then, medical doctors lined up to see and take pictures while I sat on a hospital bed when I was about 3. My ILVEN is on my right thigh and stretches from the top of my leg to about mid thigh(two hands long). As a teen i had dermabrasion done, freezing and surgical removal but nothing seemed to work. I was very shy about showing it to anyone but am very open about it now. I dont feel that it caused me any trauma growing up except the constant itfching!!! I use only Eucerin creme to moisturize it and I sleep with a hot pad on low and the warmth tends to keep the “tickling fingers” that drive you crazy at bay. I was thrilled to hear that it is not hereditary as this has been a small concern for me. None of my children (I have 3) have an ILVEN. I always wonder if they can become cancerous and how likely that is. Anyone know? This is honestly the first i’ve ever looked anything up about this rare thing I have and it’s interesting. Thanks
By: Lori on May 11, 2009
at 10:10 pm
Hi, I came across your site in researching ILVEN. My daughter has had these strange lesions on her ankle and calf, took her to a specialist who took a piece of her ankle for a biopsy. They came back and said it was moles and to treat it with hydrocortizone if I wanted to. Seemed to be doing nothing, so we went back and saw another pediatric doctor at our family office. He received the info from the specialist, and has diagnosed it as ILVEN. Luckily for us, they don’t itch or bother her. We are about to start working with specialists at IU Medical Center, and I pray that her case, that seems mild but numerous spots, can help us with some sort of treatment.
If you have the email address to the 17 yr old girl, Casey, that has it, I would love to talk with her via email.
Thank you! I pray for what you are going thru, as our journey is also just beginning.
God Bless,
Lori and Kendall
By: Lori on May 13, 2009
at 8:25 pm
Thanks Karen…
By: Lynda on May 28, 2009
at 5:29 pm
Lynda and Karen-
Car’s, mark on her bottom is spreading, she has a new mini patch above the old one and i feel sick. i was on line, to find the CURE….and found a case study of a doctor who used 2 kinds of topical creams to cure a ilven case.
he is the head of Ped. Derm at some university in Clevland OH.I emailed him pictures of car and he said it looked like ilven to him and than said i need to find a Ped. Derm in my area, there is no one of speciality around here, went i went to ask another question, and he had is “assistant” relpy that i was not one of his patients. So now im back to page one. im so mad.
By: Rebecca on May 29, 2009
at 2:01 pm
I am so happy to have found you all. I am the mother of a 17 year old son who was diagnosed with ilven/epidermal nevus in 2004 and again recently by 2 other local doctors – none of whom have ever seen this and after referring me to a pediatric neurologist for a full workup have advised me to seek treatment by someone familiar with this disorder. This is no small job. I have searched and search and finally have found someone in Jacksonville, Florida (4 hours from home) whom I will see on Wednesday. In response to Lynda on May 6, 2009. My son has always had an area on his left groin as far back as I can remember however when he was younger it was simply an area of skin that just didn’t match, then it turned a slightly different color and now has progressed to a very raised very warty area. I am really searching for some support. Thank you all for your time and for sharing your stories – I don’t feel so alone anymore.
By: Kristie on June 8, 2009
at 9:48 am
Like many of your other responders, I have ILVEN as well. I was about 10 years old when I first noticed the raised bumps and ichy rash in my right armpit. I was not through adolescence then, so the ‘rash’ appeared to cross over my right breast and chest. After I was diagnosed, my parents and I realized that I also had ILVEN on the pam of my right hand that had been there for as long as we could remember. The middle school and high school years were a little tough because I was a competitive swimmer and people would often see my armpit when I was in a swim suit and then ask about it. But ultimately I think I was my own harshest critic. I am now 29 years old and I rarely even think about my diagnosis. The ILVEN had really spread out as I have grown, which is fortunate because it is a lot less noticable, but I have also come to accept and appreciate this unique part of me.
By: adrienne on June 9, 2009
at 5:10 pm
Adrienne, I was just wondering…Did you try many or not many treatments for it? Also, did you ever have any other medical problems in your life, like thyroid problems, etc.? My daughter is 14. Her Ilven is completely governing one side of her body. She doesn’t have problems with itching though. She is an advid swimmer. I don’t know if that helps with that or not, but we have never had that problem of itching. Well, just please let me know what you think. I want to help her soooooooooo much. Thank you…Lynda
By: Lynda on July 2, 2009
at 10:30 pm
Rebecca, believe me I know it is soooooooo frustrating!!! I emailed a dermatologist in New York who claims he is one of the best regarding all aspects of dermatology, and he gave me this other doctor’s name. His name is Dr. James Rasmussen and he is in Michigan. He is very well known apparently. He is a professor, dermatologist, and is in many medical journals. I just emailed the doctor in New York recently so all of this is all new to me. I am going to investigate into this. Maybe Dr. Rasmussen can help??? We live in Illinois, but I wouldn’t mind traveling anywhere if someone could help. Well, let me know if you look into this doctor, and I will let you know if I find something out as well. Thanks…Lynda
By: Lynda on June 16, 2009
at 2:32 pm
Hi all. I just wanted to apologize for letting this post go unmanaged for awhile. I’m out of the habit of blogging and haven’t logged in for quite awhile. When I logged on today I realized that there were several new comments that needed my approval. Sorry to make you wait!
On a personal note, my son’s ILVEN seems to have improved quite a bit and we’re much less concerned. He’ll be two in July and his chin looks great! We consider ourselves very lucky! Maybe since he was so young when he got it, his cleared up in toddler-hood? We see it flare up once in a great moon (seems to correlate the most to allergy season), apply a very little bit of Protopic, and then it’s gone again. (This is the course of action our dermatologist has still recommended, since it has been successful for my son. It was originally prescribed by his pediatrician who thought he was treating eczema, and it just happened to work. The dermatologist feels that it is very safe for our type of use. We’re willing to trust her decisions.)
Although I feel much relief and am very thankful for the way that my son’s ILVEN has cleared up, I will never forget the stress and grief that it caused me upon diagnosis. Luckily, no one notices his anymore. Of course, who’s to say that it won’t return? I’m glad that my blog has offered a way for others to voice and share experiences with this, because when I first started searching the web, there was very little for me to find on ILVEN. Please keep posting and sharing, and be patient with me if I don’t get to it right away.
By: Nikki on June 17, 2009
at 10:47 am
Lori-may 11th
and everyone else too! LOL i loved your tip on the heat pad- i always thought heat made my daughter more itchy i will try that tomorrow. and i have found AQUAPHOR to work wonders for the pain. everything else i tried drove her crazy. her ilven IS spreading, but stays in the general area. I need to know if certain foods made it flare? do you use special soap for your wash? and what is the best way for me to explain to a 3 year old what she has- it is on her bottom so not many people ask LOL but it often does come up. All i can say is that thong swim suits are’nt in her future…thank God!
By: Rebecca on June 27, 2009
at 6:08 pm
Oh and P.S. with all this Bail out money-i think some of it should go to reserch on Ilven.
By: Rebecca on June 27, 2009
at 6:17 pm