coping with son's diagnosis

Hi -

     I'm new here - as my son was recently diagnosed. I'd love to hear from others - especially parents, on how to cope with this.  I'm just so upset - I keep thinking about my sweet little guy (he's only 2), and it makes me cry.  I know he'll have this struggle his whole life and it really breaks my heart.  I wish it was me, not him...

     We first noticed it a little over 2 months ago - when a few of his eyelashes turned white.  He now has about 6 or 7 white eyelashes, and a few white hairs throughout his head.  (All on his left side).  He has a few spots on his left temple - but has really fair skin, so they're not really noticeable.  In fact, the only way I even saw them was under a special light at the dermatologists office.  He's completely unaware of what's been happening to him (as is his 4 y/o sister, or at least she's never mentioned it). 

     His dermatologist prescribed Protopic, but I'm hesitant to use it because of his age (and the warning on the package about possible links with lymphoma). 

     Has anyone had any success in treating lashes/hair?  I'm just not sure what to do/think - and would love to hear from others going through this.

Thanks in advance. 

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Replies

  • Beth - my five year old has vitiligo, so I do know how you feel.  Read through vitiligomap as Flavio suggests - we are trying a functional approach like this x

    • Thank you so much - I'll ask his derm. about it when we go back in June.  At this point, she actually told us since it's pretty minor to just wait and see what happens - and not treat it with protopic (as she originally mentioned). 

      I think the uncertainty is the hardest thing for me.  Right now it's just a few eyelashes and a few white hairs near his left temple...so it's pretty minor.  But, I keep thinking 'how much is it going to spread, will it get really bad, will it effect the other eye...etc.'  I just wish I knew.

  • Flavio - why pseudocat cream for this case?  I thought that protopic worked best for the face.  Is it because it is the eye area?

    • Specifically hairy areas like eyelashes work better with pseudocatalase.

      In the overall, Protopic  is still better for face.

      The combination of both is the best to be done.

      • thanks Flavio

  • I can understand ur pain...even I saw my parents silently crying sitting next to me at night.......

    Dont worry..he'll be cured....lets pray god....

    Protopic is not recommended at eye area....

  • I think pseudocatalase cream seems to be the one that fits this case.

    It's works for hair and skin.

    No side effect has been reported.

    Regards.

    Check www.vitiligomap.com/pseudo.html

    also 

    www.vitiligomap.com/germantreat.html (this treatment would have to be adjusted by a Doctor since he is so little.)

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