I am sorry for the late response but it has been a very hectic last two weeks. Plus I am not vey good at navigating this site yet...LOL
The slide show is wonderful! I will definitely show my son. He will be happy to see that he is not the only little boy that has Vitiligo.
Latif has used the Protopic by itself and with steroid cream but neither has worked. He stopped using it previously but has recently said he wants to use it again. We are scheduled to go see a doctor listed on this site next week - the other derms. have been helpful but I don't think they all really understand how vit. affects people.
Latif's vit is around his lips so very noticible and he has some small spots on his arms. It started as a small patch next to his lip when he was 3-4 yrs old and has very slowly grown bigger but it is thankfully not progressing quickly at all. Very noticible though because he is African American.
I had not heard if AAD but will take a look at that for the summer camps.
Maybe the boys can send emails to each other one day.
Jodie Pierson > Marilyn TaylorApril 12, 2011 at 2:50am
It would be neat if they could meet at Camp! I am picking up our referral form for camp from his derm today so that I can send it off. We chose camp horizon as his camp of choice due to scheduling conflicts that we had with the earlier dates.
I understand what you mean about the derms not getting it. Even though Dylan is an extremely pale white boy, he is still efeected by having vitiligo, he worries about it. It effects him. I am so glad that it isn't painful in the physical sense but that doesn't mean that he isn't still hurting because of his having this. It is an emotional and appearance burdon. It is very real and has valid emotional side effects, no matter how many derms minimalize it in comparison with the other horrible skin issues that they see. I don't blame them at all though, they are trained to treat the physical incidences of skin problems not to attend to the emotional aspects of them, and well let's face it...they right, they don't have skin cancer. Thank god!
I think the pen pal idea is cool, I bet Dylan might too.
My son does experience a variety of other symptoms in addtion to pigment loss. For me it can be really difficult to tell how much is a physical, psychological, or a phycosomatic combination of both. He has been tested for secondary issues with no other diagnosis. I believe that it is a reaction to stress and his way of trying to have some control over things during what has proved to be a pretty challenging past year. In addition to his diagnosis school has been a challenge and there have been a few other factors too. This is the case for us, I would also support the suggestions of ruling out any other possibilities. My older son had a friend who had mononuclosis (SP?). He did not actually seem ill in any other way besides being extremely tired, they only went in to the dr because he had fallen asleep in class but was not having a deficit of sleep at home. Good luck! I hope that you can find answers quickly!
How old is your son? My daughter has high academic goals I feel related to wanting to succeed to prove something to those who have been unkind. She is on her way to becoming the valedictorian of her class. She wants to study genetics but the fatigue gets in the way. Hang in there.
Jodie Pierson > Michelle RondinelliApril 1, 2011 at 5:35pm
My son Dylan is 10 also...also not as focussed in school just yet :-)!
He developed his first signs of vitiligo just a few days after his 10th birthday, it is spreading really fast though! Protopic can't keep up...we added a steroid cream too, but it is all spreading so quickly and effecting new areas at a rapid pace.
He talks about being nervous about summer because he doesn't want his normal skin to tan at all. He knows that I will buy wahtever he want to use to blend and cover...within reason...microskin is out of the question. He doesn't want to wear make up though. His vitiligo is visible when it's not covered but still most people don't really seem to notice...that won't be the case if it keeps spreading at the pace that it has been though. He gets kind of anxious about it. Spending as much time as he can skateboarding seems to help him forget about it all. We are applying for him to go to one of the American Academy of Dermatology Summer Camps, search for Camp Discovery AAD online. I think that this type of experience will make him feel a lot more normal about what he is dealing with.
We made a slide show if you want to see it you can click on the link :-)
This site is so wonderful, it is great to be connected this way!
Marilyn Taylor > Michelle RondinelliApril 1, 2011 at 4:53am
He is only 10 so not quite as focused as your daughter yet. His biggest goal is to get a new beyblade (toy) right now, LOL.
- Last January is when we went to doctor and she explained Vitiligo to him. He went because he wanted to know what it was and why he had it. Other children were asking him questions and being unkind to him because it is around his lips where it is noticed right away. He is doing better now but at first he didn't want to do anything new or be around new people. Always wanted to stay in his room saying he was tired.
He is doing better now. I keep him active in team sports and Kung Fu. His self-esteem is getting much better.
How long has your daughter had Vitiligo and how was she able to stay positive?
Since 5. She is not always positive but drive has taken over. It consumes our household. I guess she wants to be defined by something else. The problem is now people complain about her efforts in school and say she is an Honors student on steroids. They have no idea about the vitiligo as makeup and clothes hide most of it. I'm glad your son's self esteem is getting better!
Marilyn Taylor > Michelle RondinelliApril 1, 2011 at 6:12am
I do hope my son becomes an Honors student on steroids as well. That is a wonderful problem to have :-) He is doing well in school so far. He has had it since he was 2-3 years old but it is becoming more noticible as it spreads around his lips. He meets new people all the time and with new people come new questions. He still has not met anyone else who has it. But it was good for him to see (on this site) others who have it. I say in someones comments that there was a group that set up pen pals , will check into that. Good luck to your very bright yourn lady!
Replies
I am sorry for the late response but it has been a very hectic last two weeks. Plus I am not vey good at navigating this site yet...LOL
The slide show is wonderful! I will definitely show my son. He will be happy to see that he is not the only little boy that has Vitiligo.
Latif has used the Protopic by itself and with steroid cream but neither has worked. He stopped using it previously but has recently said he wants to use it again. We are scheduled to go see a doctor listed on this site next week - the other derms. have been helpful but I don't think they all really understand how vit. affects people.
Latif's vit is around his lips so very noticible and he has some small spots on his arms. It started as a small patch next to his lip when he was 3-4 yrs old and has very slowly grown bigger but it is thankfully not progressing quickly at all. Very noticible though because he is African American.
I had not heard if AAD but will take a look at that for the summer camps.
Maybe the boys can send emails to each other one day.
I understand what you mean about the derms not getting it. Even though Dylan is an extremely pale white boy, he is still efeected by having vitiligo, he worries about it. It effects him. I am so glad that it isn't painful in the physical sense but that doesn't mean that he isn't still hurting because of his having this. It is an emotional and appearance burdon. It is very real and has valid emotional side effects, no matter how many derms minimalize it in comparison with the other horrible skin issues that they see. I don't blame them at all though, they are trained to treat the physical incidences of skin problems not to attend to the emotional aspects of them, and well let's face it...they right, they don't have skin cancer. Thank god!
I think the pen pal idea is cool, I bet Dylan might too.
Have a great day! Say hi to Latif for us. :-)
My son Dylan is 10 also...also not as focussed in school just yet :-)!
He developed his first signs of vitiligo just a few days after his 10th birthday, it is spreading really fast though! Protopic can't keep up...we added a steroid cream too, but it is all spreading so quickly and effecting new areas at a rapid pace.
He talks about being nervous about summer because he doesn't want his normal skin to tan at all. He knows that I will buy wahtever he want to use to blend and cover...within reason...microskin is out of the question. He doesn't want to wear make up though. His vitiligo is visible when it's not covered but still most people don't really seem to notice...that won't be the case if it keeps spreading at the pace that it has been though. He gets kind of anxious about it. Spending as much time as he can skateboarding seems to help him forget about it all. We are applying for him to go to one of the American Academy of Dermatology Summer Camps, search for Camp Discovery AAD online. I think that this type of experience will make him feel a lot more normal about what he is dealing with.
We made a slide show if you want to see it you can click on the link :-)
http://secure.smilebox.com/ecom/openTheBox?sendevent=4d6a4d344e4449...
This site is so wonderful, it is great to be connected this way!
He is only 10 so not quite as focused as your daughter yet. His biggest goal is to get a new beyblade (toy) right now, LOL.
- Last January is when we went to doctor and she explained Vitiligo to him. He went because he wanted to know what it was and why he had it. Other children were asking him questions and being unkind to him because it is around his lips where it is noticed right away. He is doing better now but at first he didn't want to do anything new or be around new people. Always wanted to stay in his room saying he was tired.
He is doing better now. I keep him active in team sports and Kung Fu. His self-esteem is getting much better.
How long has your daughter had Vitiligo and how was she able to stay positive?
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