A dermatologist recommended enbrel injections. He said he saw some improvement with that. Laser surgery doesn't work. We need more research on ILVEN as it is a terrible skin condition.
I have had some of my ilven removed by a pulsed CO2 laser tx by a dermatologist in Chicago, IL - Dr. Jerome Garden and by a Doctor in Austin TX- Dr. William Ramsdell. I still have some left but some areas I can easily say are 90% better. It does take several tx but there is hope. I hope this helps.
My 22 month old daughter has just being diagnosed with ILVEN on her right leg. I am depresses. How itchy does it get, and are there varying degrees?
I am 21 now and have been receiving treatment on my right leg from hip to calf forever it seems, it gets treated with a pulse dye-laser which relieves some of the symptoms. For me the CO2 laser did nothing it grew right back the many doctors told me up to 5 treatments and it could make a difference (but the pain / possibility of infection wouldn't have been worth it), instead i had a test section surgically removed from my leg and that has worked the best yet the risk and infection and location made it hard it hard for the stitches to heal.
For me there are many irritants water (city vs well), chemicals, detergent, fabrics, weather, salt (ocean, sweat). Yes there are varying degrees to itching and burning, if its too moist vs too dry. Growing up with it now with the technology is better than what my parents and went through even just 10 years ago. If it gets treated on a regular basis a comfort zone can be achieved, but its difficult at times to deal with and it was as well for my parents.
My 3 year old has ILVEN what can i do to help her, she has it on her knee and around her "diaper" area. Many times out of no where she will start crying saying that its itchy and hot, i was given a steroid cream to apply ( i used it as little as possible, maybe once or twice a month) and she grew pubic hair! so that's out, what seems to be working now is when she gets out of the bath putting lotion on her all over and on her spots i will also apply some baby oil gel. any other home solutions that have worked for others? will it ever not be soo itchy? the dermatologist said it will stabilize after puberty....is this true? she is kinda dingy. i just want to help my baby....any advise will be welcome! Thanks
Sorry to hear about your daughter having ILVEN. I'm 40 yrs old and have had ILVEN my whole life as does my mom. I have a 9 mo old baby girl and she just started showing signs of ILVEN on her right thigh. I personally have tried the powerful lazer treatments and various medications but nothing has taken it away. I've found that over the counter cortisone creams work well on my legs and thighs in reducing redness and helping with the dryness. I've recently gotten some for my daughter so we'll see how it works. As you probably know, excessive temperatures make it worse....to cold or to hot and you will be miserable. So if she complains that it's hot and itchy then cool the area with water or fan, pat dry and then apply the cortisone and try to leave the diaper off for a while. Also, I use a mild cleanser on my body that doesn't contain soap or any drying agents (Cetaphil) and lather with a moisturizer for sensitive skin immediately after a bath and several times a day (Aveeno, Lubriderm or Walmart's generic to Vaseline works well for me). In your daughter's diaper area the cortisone ointment may work better to help provide a barrier between the diaper and the skin. I hope that you find something that works.