Vitiligo Support Forum

Hi there! 

I am so new to this.  My 3 yr old twin daughter started getting white spots in her groin area about 6/8 month ago, didn't think much at 1st but when it started to grow we took her to see the Dermo.  He gave us Protopic and said come in 6 months!!!!  We are devestated as to what to do next.  I have noticed few spots on her neck also. 

Has anyone seen this in a child?  Why did thsi happen to her?? She is just a child with no illness!  Does she lack any vitamins?  We are vegetarians.  She eats a healthy balanced diet. 

Pls kindly advice us on what we should do.  Protopic seems to be itching her, & she seems to be scraching, makng it worse.  is that common??  Pls give us any information that can help. 

Much appriciated

Lena

I am going to tell you some very important things

1. no one knows the cause of vitiligo, and there is no cure...protopic does remove the white spots, but it doesnt prevent it from showing up in other areas


2. use the protopic exactly like your doctor told you, on every spot. You caught it early and if it goes away then you are lucky. It is very important to use it every day.

3. If it does not go away, you must try your HARDEST to teach the child to be comfortable in her own skin.

4. How other people will react to her in the future depends ENTIRELY on how she feels about herself


if she is self conscious, other people will be nervous around her

if she is warm and confident, other people will be comfortable with her

please learn from my mistakes, I grew up with vitiligo and I have learned so much

im only 21 and in college

It is really painful for parents to see this in their kids...

I agree with the views... very important that you teach the kid to be comfortable with herself... she can be an amazing person as she grows...

This disorder has a cure especially in kids if caught very early - topical applications dont help and need to be supplemented with oral medication.

I would suggest if you can discuss with your local specialist an approach that few doctors use globally now - "pulse therapy" - a special way of administering drugs and has had positive results - it does not "cure" or "repigment" but the approach is to stop the spread of the patches and needs to be taken carefully over a period of 3-5 years and can only be stopped upon advise of a specialist - during the course the spots repigment themselves if the melanocyte density is good on the skin spots (which another research has indicated remains 20 years post the onset of disorder)...

Hope this helps

I totally agree with Kamendex. Your daughter being a girl...you need extra care to handle her emotions. Vitilgo requires more of emotional treatment than physical treatment.

I am not scaring you but you have to be courageous to make her independent in life.

 

Best of Luck

 

Hi. I am 21 years old and developed Vitiligo on my right leg when I was 5 years old. Having to deal with my Vitiligo has been very difficult but has also be strangely helpful to me in life. I didn't have much self-confidence when I was a child, there were a lot of other reasons for this other than having Vitiligo by the way but it was the cause of some of it. My mom and two sisters were always telling me how beautiful I was which helped me a lot. When I got into my early teens I didn't wear shorts out in really public places because people would look and ask questions about it (oh the joys of living in a really small town). But now I have got WAY more confident. It doesn't bother me as much anymore, I am actually extremely out going despite it. I decided that I wasn't going to let it ruin my life, so I go to the beach and get out in the sun as much as possible. Thanks to many friends and family that have encouraged me and helped build me up. I have also had people tell me that they think its really cool. And my fiancee thinks its hot.

I didn't see a doctor about my Vitiligo until a week or so ago =). She actually told me that getting in the sun was good for it, it will get red and look like its burning just make sure that it doesn't burn. I have also started a combination of medicine for mine, Clobetasol Propionate Ointment 0.05% and Protopic 0.1%. Hopefully it will help but if it doesn't no reason to get upset. People like me for who I am not what I look like right.

The medicine that helped me has shown wonder results for children and adults alike. Write to me if you want to know more, always willing to help anyone with this

http://reelmccoy.tv/vitiligo