treatments in a young child...do they make sense?

Posted by lia forcina on July 14, 2011 at 8:41pm

My 18 months old son has been diagnosed with vitiligo 3 weeks ago. It seems to be spreading very aggressively and his tummy and groin are depigmenting very quickly. He has also one patch on his eyelid. We took him to see the 3/4 guys in europe that seem to be the most competent and they agreed on a therapy based on methylprednisolone cream and oral betacarotene/antioxidants for two months. The second stage would be 6 months of tacrolimus. My questions are: 1. does any of you has had any successfull experience in stopping the desease from spreading for a long period of time in his child? 2. since it's chronic and there is no cure does it make sense to bombard him with medicines at such a young age knowing that we are just trying to delay the inevitable?

 

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Replies

  • Sand July 18, 2011 at 9:27am

    Like Kelly, I too was diagnosed as a child.

    I was taken to different doctors and they were told that there was nothing that could be done, one doctor suggested iodine treatments and also liquid vitamins.  They did give me the vitamins for a period of time but it never made a difference.  My skin though the years would re/de pigment on it's own. I was able to cover most of it up through childhood with clothes and at 18, it started to rapidly spread.

    None of my doctors ever told my parents to keep an eye on my thyroid and I was diagnosed with Graves' Disease at 26.  I've never tried any repigmentation treatments and am now 99% depigmented naturally.

    In my experience, Vitiligo takes more of an emotional toll than physical one.  Because there is no cause or cure, there isn't a map or guide book on treatment.  Some work for some, not for others.  Let your kids know that Vitiligo is a facet of who they are, it doesn't encompass their entire identity!  Therapy has helped me and others a lot and if your kids are struggling with it, please seek that venture.

    • lia forcina > Sand July 21, 2011 at 10:42pm
      gr8 advise thank you!
    • Jen Davis > Sand July 21, 2011 at 9:43am

      "In my experience, Vitiligo takes more of an emotional toll than physical one.  Because there is no cause or cure, there isn't a map or guide book on treatment.  Some work for some, not for others.  Let your kids know that Vitiligo is a facet of who they are, it doesn't encompass their entire identity!"

       

      Wonderful, wonderful, wonderful advice!!!  Thank you!

  • lia forcina July 15, 2011 at 9:09am
    I will keep you posted!!
  • Jen Davis July 15, 2011 at 4:50am
    My little girl who just turned 7 was diagnosed early this June.  I noticed spots that didn't tan around her eyes though last summer...our pediatrician at the time thought it might be a fungal infection.  We treated it for that with no success obviously as we were treating for the wrong thing.  We started her on Protopic and another topical cream, I let her get sun without burning, I made changes to her diet and I also decided to give her a probiotic daily as well as a liquid vitamin complex that includes B vitamins and Folic Acid.  She is excitedly getting pigment back around one eye already!!!  It started as a darker border than her normal "tanned" skin and now is thickening into her white patch.  She also has freckles of color within the white patch.  Her other eye however is not changing at this point...we are hopeful though!  I don't know what to credit the change to...I do think that getting sun has something to do with it though.  Apparently it triggers the hair follicles which are responsible for the pigment cells to react and do their job.  She has her second appt. with her dermatologist on Monday, I'll let you know if I learn anything new.
    • Becki > Jen Davis July 18, 2011 at 8:46am

      Where are you getting the probiotic and the liquid vitamins?  Why liquid vitamins? 

       

      Congrats on the repigmenting!

      Becki

    • Steve Jones > Jen Davis July 17, 2011 at 11:34pm
      That's great news.  My son was diagnosed in June and treatment is scheduled to begin very soon.  He is 11.  I hope we can have similar results.  How quickly did you see the pigment begin to come back, especially around the eye?
    • Jen Davis > Steve Jones July 18, 2011 at 12:32am

      I would say it took us a good 4 weeks...it started with my noticing a dark border surrounding her white patch.  I initially thought it was just what spreading looked like but then it started getting freckles within the white patch as well.  She's still got a ways to go but we are hopeful.  I will try and upload a picture so you can see what it looks like.  We actually have her second appt. with her derm. today.  I will post if I learn anything new. 

       

    • Steve Jones > Jen Davis July 18, 2011 at 12:39am
      Thanks. We start treatment soon. Don't know what is safest. Everything seems to potentially cause skin cancer (phototherapy, cortozone cream, non cortozone cream). Very confusing.
    • Jen Davis > Steve Jones July 18, 2011 at 12:42am
      I know what you mean.  I have some questions for the derm. today regarding that.  Initially they just gave us the treatment and we were left to research on our own what it all meant.  It seems some of the research says treatment is good and other report bad.  I worry too about putting the Protopic so near her eye.
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