My son Ahyden is 8 years old and has had vitiligo for almost 2 years..It started as a spot under his eye and within a couple of months took over the whole area..now he has no pigment in his eyelashes and eyebrow. He recently had to start seeing a therapist due to this condition..my once social butterfly now hides in the background not trying to pull attention to himself. He has been classified as having major depression and generalized anxiety and struggles everyday with his apperance. He asked me,"what did I do to get this because nobody else has this..It breaks my heart..when you talk to the kid he will turn his face down and to the none effected area so you can't see his spot while you are talking with him...anyone that may actually ask about his eye be aware..he gets very upset and uncomfortable. He calls his vitiligo his "secrete" but I tell him people won't care how he looks..its your personality that people see..but he's 8 and still not to that point of understanding. His father has even contiplated having his eye tattood to look like our sons so they go thru it together..but im not sure that would help either .I'm looking for some good feedback to use with him...or maybe even if you have a child with similar spots on the face that he could relate to...I'm scraping bottom here...i have no idea what my next move is..
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Hi
It is one of the difficult experience you are facing. I am with you as i too as a father feel so bad at times.
you feel powerless. but hopefully we get some breakthrough and all our worries are washed off.
take care
raj
My daughter is 8, she has an ever-changing spot on her face, it even covers her eyebrow which has also lost some pigment. I know this can be very hard, esp. in a world where there is so much "focus" on apperance. I would like to encourage you to continue to be positive, just give him positive feedback at all times and remind him how loved he is. If you have not yet, you should get hooked up with the American Vitiligo Research Foundation, you can find them at www.avrf.org they have a children's corner there, so much wonderful info, and wonderful people, there your son can see he is not alone and that in fact there are lots of kids like him. I would also try to not let your son see you discouraged if at all possible, the children really do look to us for our responses to these things.. you are doing great, don't worry, my daughter's V started in Kindergarden, she is now in 3rd grade, she has become more confident in each year, if your son would like her as a penpal, or someone his age to talk to with the same condition, let me know and we can exchange info :)
My daughter was just diagnosed 6 weeks ago. This is all very new to me. She is in kindergarten. It is on her chin and neck but only on the right side. How or when will I know if it is segmental V? We are using Protopic. The V isn't bothering her at all right now. I just wish there was a support group for parents and kids of V. It would be so nice for her to be able to meet kids that look similar to her. Is it that rare of a disease? I haven't been able to find a support group in our area. Any suggestions on how to find a support group? Sorry to bombard you with questions. Any help would be so appreciated. I try very hard to have a positive attitude when talking to her about V. Thanks so much.
Hi Barbara! My daughter was diagnosed right before Kindergarten and she is now finishing up 1st grade. She has Vit spots virtually everywhere, except her face. I fight the face spots with the Protopic. Protopic works quite well on faces. I have talked to my daughter about what to say if someone asks her about it and we have practiced. Give her some "go-to" words to use when she is asked. We tell people what it is, that it is not contagious, and it doesn't hurt. I have called them inside out freckles and clouds on her skin. I really want to talk to my daughters classmates about it to demystify it, but she will not let me. And so far I have respected that decision. She handles it just fine and has not needed my help. I stay in contact with her teachers. I send sunscreen to school and she applies at school for recess, etc. Consequently, a handful of girls have brought sunscreen! :) Good luck and stay positive! This does NOT have to define who she is and I try really hard to not let that happen!
Becki, thanks so much for replying. I think we can all learn from one another. That is a great idea to talk to her about what to say if asked about the Vitiligo. I like the term "inside out freckles". I don't want the Vitiligo to define who she is. That is a good point. I want people to look past that and see who she really is. I really appreciate your response and advice. It means a lot. Some days I don't think much about it. But there are other days that I begin to worry about her and how she will handle things in the future. I definitely don't let her see that worry. I am so thankful for this group!
Hi Barbara, I just wanted to say hello to you. My daughter is 7 and we've known now for about a year that she has Vitiligo. There is no support group where we are either and I wish there was one. This forum has proven to be a great resource though for when I am doubting things along this journey. A positive attitude is key! Best wishes to you!
Hello Jen. Thanks so much for the response. I am so glad that I found this group. It's nice to know that I have this support of all these other parents. I agree that a positive attitude is so important. The best possible outcome would be that the Vitiligo would not bother my daughter at all. Thanks again!
hi natalie , your daughter vit looks like segmental or focal type vit. r u using elidel or protopic. Did u try excimer laser?
hello, yes her V is segmental, I have not tried any laser products, to be honest the only thing we did try for a short while was Protopic, but we decided not to continue using it. At this point we are not using any "treatments"....
my daughter vit is segmental and has on her right side of face only. we are using elidel from past 4 months and its 50% repigmented. The following treatment plan was recommended for our daughter
(1) 6 months - elidel or protopic
(2) left over white spots to be treated with targeted phototherapy(excimer laser).
(3) after laser treatment if still any stubborn spot left can think about Melanocytes surgery.
I would advice to talk to a good dermatologist(vitiligo expert).
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