Who knew ILVEN touched so many lives? Thank you all for your comments and telling me about your own experiences. So far my daughter has been really blessed and although we see the little white line that runs down her leg she has not had any flare ups in over a year. I wish I knew what made it disappear or what keeps it away, but I have no idea.
Please keep sharing your stories, thoughts, and even vents. I really appreciate them all!
Friday, July 5, 2013
Monday, January 31, 2011
ILVEN (Inflammatory Linear Verrucous Epidermal Nevus)
First off, let me say if you have found this post by searching for ILVEN and are looking for answers I am sorry. I still have none myself.
I guess I should start from the beginning... Around the age of 6 mos. my youngest daughter Grace developed a small linear rash on the inside of her right leg calf. It was only about an inch long and didn't look like anything too serious. I did notice it was growing a little and the fact that it was in a straight line had me curious. At our next doctors appointment I pointed it out and she thought it may be eczema. So, we got a prescription for some cream and went on our way.
Over the next couple of months the rash spread rapidly. It was still linear, but now it went from the middle of her foot all the way up to her belly button. It's not a horrendous rash. Really, it is pretty thin and sections will fade in and out at any given time. At the most it is red and bumpy. It does leave her skin discolored with permanent loss of pigmentation when it fades. This makes it look like a long white scar. I can't count how many people have looked at her leg with pity and asked why she had surgery.
It doesn't bother me that people ask me. I just dread the day when someone asks her. Right now I think she is pretty fond of it. At our first appointment with a dermatologist she jumped up in the chair and when he sat down beside her she pulled up her dress and pointed to her leg proudly. I can only hope she can keep that positive attitude.
That was quite an overwhelming appointment. He asked if we were in a rush and if it would be okay to bring several other people from the office in to look at her leg. I was told that it was extremely rare and they didn't get to see this very often. I immediately got excited that we would finally get answers. I got one: ILVEN.
It doesn't hurt her and for that I am grateful. Our dermatologist told us it could become extremely itchy and painful. That is when they opt for surgical removal, which rarely works and only gives temporary relief. It almost always comes back. So basically we don't know a cause as there isn't enough research which means we don't know what the future holds either.
I guess I should start from the beginning... Around the age of 6 mos. my youngest daughter Grace developed a small linear rash on the inside of her right leg calf. It was only about an inch long and didn't look like anything too serious. I did notice it was growing a little and the fact that it was in a straight line had me curious. At our next doctors appointment I pointed it out and she thought it may be eczema. So, we got a prescription for some cream and went on our way.
Over the next couple of months the rash spread rapidly. It was still linear, but now it went from the middle of her foot all the way up to her belly button. It's not a horrendous rash. Really, it is pretty thin and sections will fade in and out at any given time. At the most it is red and bumpy. It does leave her skin discolored with permanent loss of pigmentation when it fades. This makes it look like a long white scar. I can't count how many people have looked at her leg with pity and asked why she had surgery.
It doesn't bother me that people ask me. I just dread the day when someone asks her. Right now I think she is pretty fond of it. At our first appointment with a dermatologist she jumped up in the chair and when he sat down beside her she pulled up her dress and pointed to her leg proudly. I can only hope she can keep that positive attitude.
That was quite an overwhelming appointment. He asked if we were in a rush and if it would be okay to bring several other people from the office in to look at her leg. I was told that it was extremely rare and they didn't get to see this very often. I immediately got excited that we would finally get answers. I got one: ILVEN.
It doesn't hurt her and for that I am grateful. Our dermatologist told us it could become extremely itchy and painful. That is when they opt for surgical removal, which rarely works and only gives temporary relief. It almost always comes back. So basically we don't know a cause as there isn't enough research which means we don't know what the future holds either.
Thursday, January 27, 2011
Henry's Ark
One of my girls favorite things to do when the weather is decent (not raining or snowing) is go to Henry's Ark and feed the animals. It is an eclectic group of animals that were rescued for one reason or another. Some are just walking around with you and others are in cages. I love it because it is extremely cheap. In fact it is free! Well almost free. You will need to pick up your own carrots to feed the animal. They are open year round, except for Mondays. And the animals never cease to amaze me. They have everything from deer, emus, camels, goats, donkeys, peacocks, roosters, turkeys, rabbits, pigs, porcupines, zebras, and much more. If you are ever near Prospect, Ky make sure to stop by Henry's Ark. Also, don't forget to wear tennis shoes or boots. I have made the mistake of wearing flip flops before only to spend the whole trip dodging what the animals have left behind.
One More Time
Okay. Let me try this one more time, almost a year later! This time I am challenging myself. My goal is to keep a record of the all the things I want to achieve or try this year. I am hoping it will keep me accountable while helping me mark things off my list. So, welcome to 2011!
Wednesday, February 10, 2010
Time to take that jump
It has certainly taken me long enough. I have had this blog for quite awhile, but for some reason was to nervous to post. I admire so many other bloggers and just didn't think I could ever do it as good as them, which I still can't, but I am giving it a go!
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