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Narrowband Uvb for Children directions

Posted by Chris on July 28, 2011 at 3:11am

My four year old has vitiligo mainly around her eyes and sides of neck. We live in a rural area so going to the dermatologist three times a week for Narrowband Uvb treatments isn't possible. I have purchased a Dermapal handheld unit for home use. My understanding is that I should treat 2-3 times a week skipping days of treatment(example Mondays,Wednesdays,and Fridays) . I should start out with 20 seconds treatments to see how area reacts and increase 20% each treatment till area gets pink after treatment.

 Is this info correct? Is there a limit of time I should stop? What about around her eyes.Does she need eye protection or just close them?

I don't wont to burn the areas. Any advice would be helpful. If anyone can post there experience that would be helpful.

Thanks in advance ,Chris

 

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Replies

  • lia forcina August 1, 2011 at 9:42am
    thanks Chris, I'll my derm tomorrow, but i don't know if diego is too young...
    by the way, for all the parents pls fill the vitiligo questionnaire for Dr Spritz on the national vitiligo foundation website...they will send a kit to your local doc to get saliva from the child with vitiligo and their parents. He has already discovered 16 genes realted and recently they made very exciting discoveries that will allow drugs now being tested for other autoimmune diseases to be used also for vitiligo with better success rate than stuff like tacrolimus. But there are many more genes involved and he needs as many samples as possible. With enough funding i think we are probably 3/4 years away from a treatment that is efective from everyone, just like what we have for tyroid or diabetes! 
  • lia forcina August 1, 2011 at 6:45am
    my question for the derm is...the way the uvb works is that it activates the stem cells in the reservoir attached to each hair..they become melanocytes and produce melanin...this work unless the attack is so vicious that it kills the stem cells too...because it is a treatment and not a cure most people depigment again after a while because the autoimmune system goes back killing the melanocytes...are the stem cells going to be replaced or once each reservoir is exhausted that's it? it does makes a difference to know because then it makes more sense to keep the reervoir intact and wait that the kids get closer to 9-10....
    • Chris > lia forcina August 1, 2011 at 7:47am
      I've talked to a doctor about that and your right you need active stem cells to create the melanin . Thats why the earlier you start treating the better. That longer you go without treatment will sometime lessen the chance of re pigmentation due to the stem cells dieing . The more you keep active .The more you will have to work with down the road..... . Everybody is different. Some people do the uvb or protopic and it last for years. Others I've talked to say they have to watch for spots to start to appear (or reappear) and do maintenance to keep the pigment .
  • Chris August 1, 2011 at 3:28am
    Well I made a appointment with the Dermatologist for Aug. 8 for my daughter to talk to him about the Narrowband Treatments. Just want to be safe :). Thinking about trying the Protopic. Seems to works well for the face in children...I'll post anything that he tells me.
    • Natalie Duy > Chris August 1, 2011 at 3:30am
      AWESOME! Good luck to you both :] Let me know whay he tells you about Protopic.
  • lia forcina July 28, 2011 at 9:51am
    that's great thank u guys!!! sometimes i feel like eve famous doctors don't really have a clue!!!!
    • Natalie Duy > lia forcina July 29, 2011 at 2:35am
      I love my skin doc. but sometimes i feel like we are the pigs on there farm..
  • lia forcina July 28, 2011 at 8:34am

    ciao guys, how do you guys know the right distance at which you have to hold it? Is the fact that it turns pink the proof that the patch has received the right amount of exposure? we are thinking of getting one for my son and the dermatologists in london told us off from doing it ourselves...thanks!!!

    • Natalie Duy > lia forcina July 28, 2011 at 9:26am
      I can answer that. I just got one today hahaha. It tells you on which light. mine i think tells me 2 inches away. :] And you only hold it there for 20 sec. and every other day increase how long you hold it in that spot :)
    • Chris > lia forcina July 28, 2011 at 9:02am
      mine has a brush like adapter that keeps its about a inch away from the skin
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