Hello
My 4 year old daughter has Vitiligo. White patches appeared on her hand 4 months ago and since then spots have appeared on her elbow and chest. I'd love to gain some insights on what to expect in the years to come and how I can help her manage her feelings towards Vitiligo. Right now, she doesn't seem to even notice the color differences in her skin.
At what age does Vitiligo seem to start bothering kids? Does anyone else have a child with Vitiligo? Are there any useful books, resources or forums around raising children with Vitiligo? Any other useful tips and advice would be great.
We have found a great doctor in Sydney who specilises in Vitiligo (Dr Richard Wittal). He has her on a steroid cream at night plus Proralen + sun exposure during the day. From my limited research to date this seems to be a good starting place - no improvement yet though!
I would be very grateful for any tips and advice. I have so many unanswered questions!
Thanks in advance.
Debbie
Replies
Expect to never stop reading and trying new things . Vitiligo is treatable . Nutrition and supplements ... and no stress !! Nothing matters more in this world for Viti people than to get rid of it . If it causes you stress then show it your finger ... school , job , friends or foes ...Its all garbage . Getting your face/yourself back is the real deal .
hello Debbie,
I am 16 years old and also started developing vitiligo at age 4. when I was a kid I didn't really start noticing that I was different until around 5th grade. that was only because I have a teacher point it out in front of the whole class.. but then it didn't really bother me much because I kinda thought everyone had it and it was a "normal" thing for kids to have. I didn't start wearing face make up until about halfway into 6th grade I think, just because everyone was wearing makeup at that point. I think the best thing you could do for your daughter for in the future and now is try to make her feel as normal and comfortable as you possibly can with her vitiligo. personally I think The worst time for us vitiligans emotionally is the summer, because you are going swimming and your in the sun more so you are getting tan. there isn't much you can do other than provide moral support! my parents have definitely tried their hardest to understand and help me out in the best way they can. That has definitely helped me out so much. But my best advice to you is make he feel as normal as possible, and make sure she knows that its okay to be different it sets her apart from the rest of the world and makes her extra special. almost like a super power :) I hope this helps, if you have any questions feel free to message me! and I hope everything goes well with your daughters treatment and all!
Hi,
Children do respond better to treatments and Australia is a good place-please refer to Scenesse (check the forum for links) who are conducting trials etc. Keep talking with your little one-its hard for children but sometimes parents can over compensate and that's not a good thing-nor is allowing any fears and apprehensions you have manifest in terms of negative associations with their skin. Lois Mitchell (on this site) has written and illustrated a beautiful children's book-which would help your little one understand they are not alone. All the best with your little one and your family's journey.
Ish x
Hi - I'm looking for the Lois Mitchell's book to help kids understanding vitiligo and cannot find it. where can I get it? do you recall the name of the book? thanks!
Her spots have been stable for about a year or two now and honestly we rarely think about it. We are lucky that she is a light skinned blond and the spots she has are not noticeable. I kiss them and tell her they're adorable! My goal for her is as many days of carefree childhood as possible. I know there may come a day when it will bother her, or it may get worse, but I'm not going to make it a bigger problem until it really is just that, and then we will go with it. Our family motto is, we go with the flow! :)
Good luck!
http://vitiligocover.com/what-is-segmental-non-segmental-vitiligo/
Knowing as much as possible is key and you've made a great choice by joining this site, those who have vitiligo truly know more than any dermatologist does! Good luck
ps. good to see another Aussie on here too :)
Hi there,
Here is an ebook that you can download for free and it contains most of the latest information about vitiligo as of August 2012. Vitiligo Q and A
Vitiligo can be really hard for kids when they start school and as they enter teenage but it sounds like your daughter has a fantastic and supportive family backgound which is the most important thing and a good dermatologist is also really important so it sounds like you have that covered too. Vitiligo patients respond differently to different treatments so time will tell, but stay positive, make it fun for your daughter and as someone already said, follow the docs intsructions to the letter because steroid creams can be hard on kids' systems.
Goodluck and best wishes
My daughter Erica start having vitiligo last year, age 4, now she is 5! I tried this steroid cream for less than a month, but it was not working!
The marks she had on her face are still the same! At one point the smallest one desappear with repigmentation but the come one just next to the first one! The big one she have sometimes get smaller some get slightly bigger!
We are in London and I will see a privat doctor in January ! I understand your fear and your concerns because I am in the same position than you...I hope to find positive responses...
Thanks for your advice! I used the cream for exactly 3 weeks, they said no more than a month! Plus my gp at the time suggest that it might be vitiligo if nothing change by then!
I found that private clinic In wimpole street, I will call them to get and appointement for my princess, I am really thinking about the photo therapy! I heard it is a "golden treatment" for vitiligo...we will see! Just like someone said on her wall: 2013 new year, new hope!
Happy New year and thanks again!
Ps: yes that's erica :-)
Hi Eli-is that your little girl? She's gorgeous!
Just a quick note-I understand as parents its hard to step back but less than a month is not really enough time to work out whether your little girl's condition is improving or not. Vitiligo is often unpredictable in the early stages and it can come and go. At five, she may be too young to look at UV based treatments but I would say to you demand your GP refers your little girl to a dermatologist with experience in dealing with Vitiligo. There are a number of them who work within the NHS and have private clinics too and there really isn't anything a private doctor can issue that isn't available on the NHS. Even if she's too young to be referred for specific treatments-she can be placed on a waiting list and she would be in better hands under a dermatologist than simply being prescribed steriod creams by a GP which can have long term effects like thinning skin etc.
Good luck and again-Erica is a gorgeous little girl.
Ish x
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