First Post- Looking for parents of young children with Vitiligo

Hello There,

My name is Wendy and I have a son that was diagnosed with Vit. when he was coming up to his 4th birthday. He had a patch on the side of his hand that started to crawl upwards to the midpoint of his arm. At first I had no idea what was happening...I THOUGHT he had stained the majority of his hand dying Easter Eggs at school (he came home with a brown coloured egg)...it wasn't until a week passed that I realized that his hand wasn't darker, it was the outside of his fingers that had gone lighter! (sounds silly, I know). Well, rushed him into the Dr (although I had already self diagnosed him) and it was "confirmed" by my family Dr, but never seeing a case herself she passed me on to a specialist. The specialist was basically detached- confirm and prescribed. We have seen him 2 times now...my son is on Protopic and Elocom and it has brought a decent amount of pigment back to his hand, but definitely not completely (although from what I hear, the hands are really hard to re-pigment).

I searching out other parents of young children OR parents that had their children diagnosed at a younger age and have now grown up. I want to gain as much knowledge that I can on this subject and have a support network in place for the times ahead. How did you deal with the diagnosis? How did your child react or did they really? (in my case, my son knows he has "a rash" on his skin and we put cream on it at bedtime...but isn't really bothered by it in the least BUT he is just about to start Kindergarten, so maybe this is where things may be pointed out to him?)

I'm trying to find out what others have gone through, what to expect, great ways you handled things/questions/situations OR the not-so-great way you did so I can learn from others before me.

If you think you can offer a kind word OR any advice I would appreciate it

Many Thanks

Wendy

Hi Wendy, I am not a parent but am able to tell you you are already doing the right thing by contacting sites like this. I was 10 when I got vitiligo patches on my forehead and around my mouth and back of knees it just suddenly appeared after a holiday and over the years got more and more now 65% of my body. My father took me to a dermo when I was about 12 the dermo said "Well cows have it I am surprised not more humans have it" that really did not help!!! And my parents left it at that and just did not talk about it ever again and to this day have not (I am now 47!!). In my opinion that was a mistake (although I can understand why they did that) I hope that the treatment works for your son, but if it is not very successful whilst not constantly eluding to the condition make sure you support him as he grows older and give him confidence it will help in later life. As you can see there are many people on here that have very positive stories to tell and I think with your support your son can and will lead a happy life. Good luck with the treatment it already sounds like its working but be prepared for setbacks.

Replies

Jen June 30, 2010 at 1:27am

Hi Wendy. There is a group for parents called "Parents Corner" on the left side of the home page. You might want to join.
Louise Rees June 29, 2010 at 10:14pm

Hi Wendy, I am not a parent but am able to tell you you are already doing the right thing by contacting sites like this. I was 10 when I got vitiligo patches on my forehead and around my mouth and back of knees it just suddenly appeared after a holiday and over the years got more and more now 65% of my body. My father took me to a dermo when I was about 12 the dermo said "Well cows have it I am surprised not more humans have it" that really did not help!!! And my parents left it at that and just did not talk about it ever again and to this day have not (I am now 47!!). In my opinion that was a mistake (although I can understand why they did that) I hope that the treatment works for your son, but if it is not very successful whilst not constantly eluding to the condition make sure you support him as he grows older and give him confidence it will help in later life. As you can see there are many people on here that have very positive stories to tell and I think with your support your son can and will lead a happy life. Good luck with the treatment it already sounds like its working but be prepared for setbacks.

This reply was deleted.