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vitiligo

Discussion in 'Parents of Children with Type 1' started by kellykate, Jul 20, 2012.

  1. kellykate

    kellykate Approved members

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    It looks as if my 4 month old may have vitiligo (we are waiting to hear what the ped. dermatologist says). I now know this is also an auto-immune and am thinking my husband and I must carry something that sets off auto-immune responses in our kiddos :(

    Does anyone have any experience with vitiligo? I am soooo worried that DD2 will now be even more prone to T1! Ugh!
     
  2. Christopher

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    If you knew before conceiving her that Ruby would have diabetes, would you choose not to bring her into this world?

    There is no point in beating yourself up about if you did or did not pass along genes that may have made her more prone to diabetes. You will never know for sure.

    As for Eloise, she MAY have a slightly increased chance of getting diabetes than a person who does not have a sibling with it, but again, there is nothing you can do about it.

    I am sorry you are dealing with the vitiligo, I hope someone here can give you some good advice. If not, I am sure you can speak to a medical professional to help you.
     
  3. hawkeyegirl

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    Generally speaking, the chance of a sibling being diagnosed with T1 is around 5%. I don't know that the vitiligo diagnosis increases the risk very much, but even if it DOUBLES the risk, there is still at 90% chance that she will never get T1. Those are pretty good odds.

    You're still quite newly diagnosed, and I know that I worried about my daughter a lot more when my son's diagnosis was more recent. I can honestly say that it virtually never crosses my mind now. I think that is common, and hopefully as time goes on you'll be able to put it largely out of your head. :)

    ETA: I think Jack has vitiligo and our endo does too. He has a roughly 2-inch irregular patch on his back and a couple of very small ones on his face. I'm holding off on doing anything, because none of them seem like they're spreading.
     
  4. maciasfamily

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    Our son also has it. He had it for probably over a year before dx as T1. We didn't know what it was since it was mostly in his diaper area. Assumed it was from the diapers covering him and his skin was always sensitive.

    Unfortunately the derm prescribed meds that our insurance doesn't cover...they're quite costly, and insurance covers only over the age of 14.

    So we haven't been back to the dr. Our endo said there really isn't much that can be done with it. Now that we know what it is, it's more obvious in other places. He's lighter skin, and most of his areas are covered by clothing except for the neck area. You can only see it when he turns a certain way.

    Figured we'll try the derm again and see if he has any other suggestions, but for now I haven't rushed anything on it.
     
  5. tiger7lady

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    My son also has it. It showed up about 6 months after he was diagnosed with Type 1. We were sent to a dermatologist who prescribed some cream that would even out the skin tone to make it less noticeable but he would have to put it on twice a day every day and she said it only worked about 50% of the time...plus it wouldn't stop new progress. So my son decided that was a waste of time. Especially since it doesn't bother him one bit. It started with just 1 spot on his lower back. 2 years later his lower back is covered in spots, his legs are very blotchy, his hands and knuckles, and a spot on his neck. He has a couple very small spots on his face but they aren't real noticeable yet. It really is no big deal except for the fact that it puts him at a slightly higher risk for other auto-immune disorders.

    My daughter so far has no auto immune problems. So who really knows. Like Christopher said there is nothing we can do about it so you deal with it and move on.
     
  6. Dan

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    I have Vitiligo on my face. After using Protopic for 45 days 2xs a day it completely goes away. I am able to use the gel once every few days now and it does not come back. Very important to use sunscreen.
     
  7. tiger7lady

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    Can you clarify what you mean by "it goes away"? Vitiligo is the loss of pigment in the skin. When that pigment is gone its gone and there is no getting it back so I'm not sure I understand how a cream can make the Vitiligo disappear.
     
  8. kellykate

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    Good points! Feel much better --deep breath! :)
    Very poignant thought Christopher -- I would hand-pick these girls no matter what! Thanks for the words of wisdom. I am typically not much of a worrier but since Ruby's diagnosis I do find I am waiting for the other shoe to drop. Not a good way to live life I know! I am happy to hear the further from diagnosis we get the more it will fade!
     
  9. Dan

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    The good news is that this is not correct. As you know this is an auto immune disease. Protopic suppresses the immune system in the local area where the ointment is applied. This is why it is very important to use sunscreen. This allows the pigment to return to its normal coloration. This is not a cosmetic ointment that fades your skin. I have been told by my dermatologist that approximately 50% of his patients respond with this treatment. I am a lucky one.
     
  10. goochgirl

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    Yossi also has Vitiligo. Its all over his knees, elbows, fingers, all the places where he ever had a scrape or scab. Its also around his eyes, so he has a raccoonish look, like his swim goggles were blocking a tan. There are spots around his mouth and neck as well. So, he has gotten comments from other children, and from some stupid/rude adults. He also has a wonderful personality, and we will teach him what to do to if someone stares. I think he's beautiful!
     
  11. tiger7lady

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    I guess I will have to do more research. I was under the impression that once that pigment was destroyed by the immune response that it could not be repaired. The 50% success rate is what the dermatologist told us as well but I know that this is not the same prescription she wrote for us. I'll check it out.
     
  12. Dan

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    Eledel cream also works but it takes longer
     

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