ILVEN

[Ann0823]

My 10 year old daughter and I both have ILVEN, primarily on our left legs and feet.  The last
question on ILVEN on this website is dated in 2003.  Are you aware of any
recent treatments that have been effective in children?

Thank you,
Ann


This discussion is related to INFLAMMATORY LINEAR VERRUCOUS EPIDERMAL NEVUS.

[maryfran08]

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.  

[gsalaz01]

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.

[PRECEIOUS]

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?

[beckitect]

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.

[beckitect]

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.