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?
Replies
You are a wonderful mother for hesitating! It's your son's health. I know that when I was diagnosed, it was harder for my mom than it was for me. The spots you mentioned aren't on his face and are easily covered, so if they don't bother him, I wouldn't worry about it. As an adult certain locations bother me, others don't, but I've had them for more than 20 years, so I'm also not sure what I'd look like without them. Mostly, I'd stick to reacting to the way he reacts & staying calm. And perhaps looking at a new dermatologist. A kid that young using something that isn't supposed to be used on those under 18 is sounds like bad judgement, especially if the listed treatments don't include Vitiligo. Most of my topical treatments cost $15 to fill, I think there was one that went to $30-ish. Also, dismissing your concerns in such a way is unacceptable. Both you & your son deserve to have a doctor who is compassionate. My favorite dermatologist also had a group of at least 5 med students with her all the time, but I loved seeing her because she talked to me, not just my mom. The one I went to most recently was great,
I would encourage you to find other kids with vitiligo for him to interact with, that wasn't something my mom did, and it's only through this website that I've 'met' others with the disease.
Hi! I have had vitiligo for 10 years I am 22 now. I would definitely not wait to pursue treatment. The longer you have vitiligo spots the harder it is to repigment. I had vitiligo as a child and my parents did not have me do any treatments and because of that the spots that I have had longest are the hardest/not repigmenting. First I would get his blood workup to make sure there are no vitamin/nutrients that are low and also an allergy test to see if he is allergic to anything that may be contributing. I had both done which was helpful. I would try the cream you received or at least try an all natural approach such as applying coconut oil ( I used coconut oil this summer along with getting sun and saw 2 spots of repigmenting from it). It is important for his areas of vitiligo to get sun which helps stimulate the production of melanocytes. Also, I would say to take a very good multi vitamin (ex) not just centrum). I would also recommend to take folic acid and b12 but since he is so young that depends. Although b12 is ok because the excess in our body just is excreted so it is pretty harmless to take extra. Trying an all natural approach is also an option personally I am doing it I am gluten free, dairy free, vegan, and yeast free. I also eat a diet very high in antioxidants (there have been studies published that showed those with vitiligo had high levels of oxidative stress). Also for supplements I take a lot (but since he is a child this would probably be too much but some of them are good to take such as a probiotic. I take multivitamin, b12, folic acid, selenium, zinc, reservatrol, vitamin d, probiotic, blue green algae. There was one study published I read in grad school that stated that poor diets were related to vitiligo, so having a very good diet is important. Repigmentation could be temporary however it all depends on the person it can also be permanent. I completely repigmented my arms and 3 years later they are still. Have you read Emily's story? Her father wrote an excellent book( which is online for free) recommending the vegan diet which his daughter almost completely repigmented with and all the supplements she takes. She is now my age (22) and is still repigmented today! Personally I would say if you don't want to pay the 340$ try an all natural approach to try to prevent it from getting worse or who knows it may not get worse and stay the way it is anyways vitiligo is all so different for everyone. Hopefully this helped, I know it is hard because when I first started researching it there is so much conflicting information online but after years of studying all about it I feel like I finally understand what is best for treating my vitiligo.
I took my daughter to a consultant dermatologist when she first developed vitiligo around the eyes and below her knees. He was more interested in my skin, TBH, and prescribed bath oil and aqueous cream for washing,instead of soap. I think he was a complete charlatan - if he knew that nothing could be done, why didn't he just say so? Five years on, she continues to bathe and shower with normal cleaning products, not the oily gunk he suggested, and her vitiligo hasn't spread so far. It seems likely to me that it will spread at some point, perhaps when she is under emotional stress, but she's not worried at present and that's the best way to be.
In your son's case, I would require strong evidence that any proposed therapy will work, and won't do him any harm, before investing my hope and cash. If there was a safe, effective and clinically-proven treatement for vitiligo, I suspect the people on this forum would be the first to know about it. Until then, I'd rather counsel my daughter to be grateful that she is beautiful and intelligent and that vitiligo changes nothing about either of these qualities.
I was prescribed Taclonex also for my vit and was also shocked by my $300 something copay.
Was it worth the price ? Not sure.....I did gain some pigment while on it but wonder if just doing UVB treatment would've given me same results.
Good luck
I have never heard of Taclonex. I just researched it and it seems it is a Vitamin D analogue ointment. I had never heard of this for vitiligo....and the cost of it....sheesh!!!