Newly Diagnosed

Posted by Genevieve Balcerak on June 30, 2014 at 2:29pm

My son has been recently diagnosed with Vitiligo. He will be four years old in September. His spots seem to be spreading fairly quickly especially on his chest and back. All of spots are circular in shape. He has repigmented a big spot on his neck. He has almost repigmented a spot by his eye and a couple spots by his elbow are freckling. I am not sure how to work on his chest and back since they are so many. He uses Elidel and a steroid cream. I think along with the sun, that is helping. I am going in for a second opinion. I feel like I have gone through an emotional roller coaster with it all. Every time I get down, I just keeping telling myself he is healthy and happy. This will not effect his health. He had a blood panel of work done and everything came back within the normal range. Has anyone else had such quick results with any creams? They said usually it takes months and his only took a few weeks.

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Replies

  • Genevieve Balcerak October 26, 2015 at 7:34am
    Hi Lisa. We have not changed his diet. He has no known food allergies, so we haven't. Since this last post, he also has no more spots on his chest and back....I have definitely accepted this more than one he was first diagnosed.... Good luck with the blood work!
  • Lisa October 26, 2015 at 4:29am
    Hi Genevieve. Thanks for replying to my page. I feel the same about the emotional part. I am looking and reading vitiligo stuff all day. We are going to see his primary dr on Wednesday and I am going to have them do bloodwork as well to make sure everything else with him is ok. Has a certain diet helped? He is a very picky eater and maybe lacking some vitamins. Thinking about finding a nutritionist too.
  • Alison Dosek July 2, 2014 at 9:23am

    I'm impressed you've gotten such great results so quickly.  I believe we've been working on my daughter's spots for over a year now.  We've seen improvements on some spots, the ones on her back and mid-tummy are repigmenting pretty well. 

     

    There are others though that are super hard to tell anything is happening, however when we're at the dermatologist's office I ask her to get out the black light so we can see the tiny dots coming in.  That is always reassuring.

     

    I've heard a lot of people say that the auto-immune diseases can be treated through dietary changes.  I've heard that going gluten free or dairy free is good.  My 10 year old daughter with vitiligo doesn't want to change her diet, at all.  It causes her too much stress and she enjoys eating the foods that she already eats.  So, right now, my hands are a bit tied as we need to work on keeping her happy and stress free. 

    I figure there may be a day where she wants to go full on into trying this or trying that and wish that she would have been willing as a kid rather than as a teen or young adult, but all I can do is support her the best I can and go from there.

     

    I've had to really pray and be grateful to make it through the moments when we want to just cry about this - and we have and I'm sure we will cry again in the future.  However all of these things are making us stronger.  It really is a blessing to have a healthy kid and we all have things about us that are not "perfect" and there will always be more down the road.  To be happy right where we are in life is the biggest blessing. 

     

    What is the steriod cream that you're using?  The two creams we are using are Chlobetasol & Protopic. 

     

    I'm sending you hope and faith and love.  We all need it! 

     

    ~ Alison

     

     

    • Libby Lewis > Alison Dosek August 4, 2014 at 2:07pm

      I'm so glad to find y'all! My daughter (13) was diagnosed with Vitiligo 2 weeks ago and I'm just finding this group. She is doing clobestasol and protopic and I see a few "dots" coming in and am hopeful that means good news.  What I'm wondering about is the new spots. How long does it take for them to show up? Do your kids wake up one morning and have new spots or do they gradually appear? 

      I have had my moments of feeling such sadness then remind myself that she too is healthy and happy (so far does not seemed fazed by the spots on her neck and the small one around her mouth). I am a hospice social worker and see the really bad stuff but I still feel very sorry that she is going to have to deal with this. I wish it could be me. 

      I'm sorry if I'm writing too much on someone else's post! I was just so relieved to find other Mama's who are in this boat.

    • BJ Pyrzenski > Libby Lewis August 5, 2014 at 4:31am
      We notice new spots when the seasons change and she gets a tan..that's when they are very evident or her moles will halo with white patches or a scraped knee or arm will turn white when it heals
    • Genevieve Balcerak > Libby Lewis August 4, 2014 at 3:58pm

      Hi Libby, My son has repigmented in some of his Vitiligo patches. He is using Elidel cream on the small spots and a hydrocortisone cream on the larger areas. I believe the Elidel along with sunlight has helped him. It is very hard as a parent to accept something they cannot fix completely. I just try to thank god that he is healthy otherwise. He is not even four yet, so I keep praying for a permanent cure.

    • Lisa > Genevieve Balcerak October 28, 2015 at 3:41pm
      Hi Libby. We went to his primary dr today and he insists no sunlight. The dermatologist said that 10-15 min a day was good. Just enough to pink in the skin. I just am feeling so confused with everything because I hear everyone talk about how the sun helps. I wish all the Drs were on the same page
    • Libby Lewis > Genevieve Balcerak August 6, 2014 at 10:26am

      Genevieve, I'm praying the same prayer! 

  • BJ Pyrzenski July 1, 2014 at 2:16pm
    Not really. Different body parts repigment differently. I've been trying things for over 6 years with my daughter ... It's still there
  • Becki June 30, 2014 at 4:41pm

    Sorry about the diagnosis.  It is an emotional roller coaster for sure!  My daughter was diagnosed at almost 5 and is now 10. She has many white spots all over her body.  I only fight the ones on her face now, as it would be a losing battle to try to work on all the rest of the spots.  The cream (protopic) has worked well on her face.  We have also tried uvb light therapy.  I even fought my insurance company and have the full size light unit in my basement now.  But she doesn't want to use it anymore, and I don't push it.  Feel free to ask if you have any questions.  I have learned that all kids are effected differently and handle it differently.  There is no real formula for how to navigate vitiligo.  But welcome!

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