My child is newly diagnosed - TONS of questions - looking for advice - Parents' Corner

My 5-year old little boy was diagnosed with Vitiligo yesterday - I actually noticed a white patch on his back over a year ago but I stupidly assumed it was a birthmark and that it was getting bigger as his skin grew along with the rest of him. The spot is about the size of a dollar coin now but most people don't even notice it and I never get comments or see stares from anyone. Just after his 5th birthday in August I noticed that there are very tiny new spots starting on his lower back (3 or 4 of them), 1 on the upper right and 1 on his tummy. These are virtually unnoticeable at this point but they are new and so I made an appointment in with the pediatrician in September then waited a month to get into the dermotologist the pediatrician recommended and got the diagnosis. By that point I had done enough research to be fairly certain of what he was going to say - that it was Vitiligo.

The dermotologist seemed very unconcerned and offered up absolutely no information - he only gave information as I asked about things based on my research. When I mentioned the concern about the the possibility of another autoimmune disease and asked if my son's blood should be tested, he basically said that there was no need to at this time but if it would make me feel better, he would right a script for the things to test for. Of course I said yes, I wanted to get his blood tested.

He then prescribed a topical treatment to be administered once a day before bed - Taclonex. I went to fill the prescription and the cost of my co-pay is shockingly huge. $340 for one tube or container and without insurance it would be over $900. Is this cost common for all topical treatments? Is it effective? Is it even worth trying to treat these small, as yet unnoticeable spots or should we wait to see if it grows/spreads? I am so confused about the treatment side of things and from what I've read, even if repigmentation occurs it will only be temporary? How temporary?

Any advice would be appreciated - if his case doesn't spread to become obvious to a point that would make him self-concsious I'm fine with leaving it but if I leave it for now does that mean I'm somehow ensuring that it will spread to become obvious? If it's going to spread, it will whether I treat these current small spots in unobtrusive areas or not right? Should I wait and pursue treatment only if it becomes a bigger problem? Am I a horrible mother for even hesitating?

Charlie,

this is a great website.. http://nvfi.org/index.php If you get a prescription for protopic and the insurance won't pay for it (about $320 a tube if your insurance doesn't cover it) have your dermatologist do an appeal using the information from the site listed above under insurance...

Letters of Appeal

It is worthwhile to have your doctor write a letter appealing any denials of coverage. Listed below are important elements, all of which are true, to include in the letter:

Vitiligo is probably an autoimmune disorder.
Depigmented skin is more susceptible to sunburn.
Depigmented skin does not function normally.
The purpose of treatment is to return the skin to normal structure and function.
The patient does get cosmetic improvement but that should not be reason for denial since all dermatological treatments, such as for acne and psoriasis, also produce cosmetic improvement while improving the skin functionally.
Treatments are not ongoing, but rather are for 3 to 6 months generally. At times they are intermittent and can continue longer than 6 months.
Especially for individuals with dark skin, it might be worth mentioning some egregious social event due to the visible depigmentation, e.g. rejection, embarrassing public moment, problems at work. These should appeal to the emotional feelings of the insurance reviewers who would not like to suffer similar problems.

Replies

lia forcina October 16, 2011 at 10:15pm

ciao charlie, my son is almost two years old and has been diagnosed in May. We had 4 weeks of a steroid cream and then protopic since september. Most of his patches are repigmenting quite a lot, a couple of them (on his tighs) are completely unchanged and the one on the eye has just started to show some freckles. He is also taking an anti-oxidant by mouth which is essentially licoprene and betacarotene. We will try for six month and see how it goes, but he has an aggressive form so it is quite likely that he will de-pigment again as soon as we stop the protopic...No idea about costs since in Europe healthcare is free for everyone...it is the first time in my life that i really appreciate how important it is to get free doctors and medicines...this website has been a life saviour from me, i learned a lot from the experience of other parents and it helped me to live with the panic of seeing a new patch...i hope it will help you as much!
Charlie Buelow October 6, 2011 at 5:11am

Thank you for the feedback - I will take Becki's advice and call that derm back to see why taclonex and if a protopic would be better. Then I'll call my insurance to see how tricky they're going to be about coverage for this - I hate insurance companies. I think the kennedy's advice on finding another derm for a second opinion of treatment and possibly someone who cares is also an excellent idea. Feels good to feel like I have some decisive STEPS to take at least right now.

Marilyn - where do I find the books for children on Vitiligo? That would be VERY helpful.

Thank you all so much for the good advice - it really makes a difference to know that we are not alone in this and I'm starting to feel like it doesn't have to be any bigger-of-a-deal than we chose to make it right now. I want to take whatever steps I can and not let worry over the possibility of hard times around it in the future. Thanks again :-)
- Becki > Charlie Buelow October 6, 2011 at 7:52pm
  
  It is SOOO much easier knowing there are other parents worried over the same thing. This website can be a life-line for us. I have no every day friends who have a child with vitiligo.
- Charlie Buelow > Becki October 7, 2011 at 6:37am
  
  I agree - I've never known anyone with this condition and I don't think I've ever seen anyone with it - if I have I don't remember it. This site is a huge comfort and a great resource.
- Kelly Walker > Charlie Buelow October 7, 2011 at 2:29pm
  
  Charlie, my 7 year old daughter was also just diagnosed with vitiligo about a month ago.. she has actually had spots for a while but it was misdiagnosed by a pediatrician and a DERMATOLOGIST.. yes, you read that right.. as Tinea versicolor.. This is the same dermatologist that told us 4 weeks ago that she DID have vitiligo... acted as if nothing was really wrong and gave us a script for triamcinolone which made her skin raw(and i found out online that it's not even supposed to be used for vitiligo unless it's in conjuction with protopic).. Dr. Apathy(as i call him) finally wrote a script for protopic and right now I'm in the middle of fighting with the insurance company and getting the lazy staff at Dr. Apathy's office to fax the right info over so the insurance will cover it.. if not, i'll have to get it from a canadian pharmacy.. right now we are using a few samples. This site is the best.. We can get info, support and vent our anger and frustration.. i wish your and cute little boy the best of luck.. keep me updated please.. Kelly..
- Kelly Walker > Kelly Walker October 7, 2011 at 2:34pm
  Charlie,
  
  this is a great website.. http://nvfi.org/index.php If you get a prescription for protopic and the insurance won't pay for it (about $320 a tube if your insurance doesn't cover it) have your dermatologist do an appeal using the information from the site listed above under insurance...
  Letters of Appeal
  
  It is worthwhile to have your doctor write a letter appealing any denials of coverage. Listed below are important elements, all of which are true, to include in the letter:
  
  Vitiligo is probably an autoimmune disorder.
  
  Depigmented skin is more susceptible to sunburn.
  
  Depigmented skin does not function normally.
  
  The purpose of treatment is to return the skin to normal structure and function.
  
  The patient does get cosmetic improvement but that should not be reason for denial since all dermatological treatments, such as for acne and psoriasis, also produce cosmetic improvement while improving the skin functionally.
  
  Treatments are not ongoing, but rather are for 3 to 6 months generally. At times they are intermittent and can continue longer than 6 months.
  
  Especially for individuals with dark skin, it might be worth mentioning some egregious social event due to the visible depigmentation, e.g. rejection, embarrassing public moment, problems at work. These should appeal to the emotional feelings of the insurance reviewers who would not like to suffer similar problems.
- Marilyn Taylor > Charlie Buelow October 6, 2011 at 5:29am
  
  Charlie, the book we used was found on this website ---> www.avrf.org American Vitiligo Research Foundation
  
  they have a children's page also. It is called Ryan's Vitiligo by Cynthia May. You can only get it here. She sent us two books for price of 1 - one for home and 1 for school. There's also a lot of good information about coping and how to present to class, etc...that can be found on NVF also.
  
  we go to a support group about once a month to talk to others living with vit. This has probably been more helpful to me than to my son :-) but he enjoys going. He sees people with different perspectives on living with vit. Some embrase it completely and some to less degrees. Some are struggling. I teach my son that his life is what he makes it. He can do anything and be anything regardless.
  
  We went to multiple dermatologists as well before we found the one we use now. He specializes in Vitiligo. I think the NVF can give you derm recommendations on their website.
- Charlie Buelow > Marilyn Taylor October 7, 2011 at 6:35am
  
  THANK YOU Marilyn! I found it and ordered it - I probably won't share it with him yet as he doesn't seem to have a clue. He just turned 5 in August and the one spot that is noticeable to others is on his back and he's barely (if at all) aware of it. No sense in giving him something to worry about that I don't think he would quite understand yet but it's nice to know that I'll have it on hand if and when he's ready. Thank you so much - this site has made me feel that we are not alone in this.
- Marilyn Taylor > Charlie Buelow October 10, 2011 at 5:26am
  
  WonderfuL! Happy you were abLe to find it. Yes, I didn't give to my son untiL he started asking questions - which coincided with the chiLdren at schooL asking and then teasing about it. Have it on hand and be prepared if questions come.
  
  That is exactLy how I feLt - not aLone in this. Same reason I expose him now to others that have vit. I wish I knew chiLdren near us that he couLd meet.
Marilyn Taylor October 6, 2011 at 4:34am

Hi, my son also has vitiligo. He is almost 11 years old and was diagnosed when he was about 3-4 years old. Initially it went away on its own but came back around his lips a few years ago. He used protopic when he was younger but that did not help. Now he is using another med that seems to be working. I can't remember the name right now. Some days you can see it some days you can't. All meds, we have been through a number of them, are expensive but like the kennedys said see if you can get samples, that helps.

I am teaching my son to love himself regardless of the spots - we are more concerned about the spots than the children are. As the children get older it gets harder because other children can be a little mean about it. That has been the hardest part for him. There are several books for children about vitiligo that you can read to your son. We actually read it to class when he was in 4th grade. That helped the children understand it and they don't ask as many questions now.

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