My 9 year old daughter was just diagnosed a week ago. I noticed the spots (first on her knees) about 6 weeks ago, but it took some time to get into a dermatologist. I have been scouring the internet for information and found this group. This is the first time I feel hope.
I have a few questions that I don't know if anyone could answer. My dermatologist did not really answer any questions, which was frustrating.
-Can chlorine make vitiligo worse? My daughter has been on swim team for 3 years now and loves swimming.
-Do we need to avoid the sun completely or can we still do things outdoors as long as we use good sunscreen? Does anyone have recommendations?
-Has anyone tried supplements like Ginko, B12, or Vitamin D with their children with any results?
Thanks in advance!
Replies
Hello! It can take awhile to find a good dermatologist. So if yours didn't help, find a new one! My daughter is 9 and has had vitiligo for 4 years. We use protopic only on her face as that is the only place we have had success with it. I started light therapy last school year, for the whole year, and saw great improvement. We ended up fighting the insurance company and now have a light unit in our basement. I have stopped using it in the summer though as she is getting lots more natural sunlight and was getting pretty dark on her normally pigmented skin.
Up until this summer I used sunscreen daily just to walk to the mailbox, practically. But I was increasingly worried about the chemicals on her skin every single day from the sunscreen. So this summer I started only using sunscreen if we were at a lake, park, pool etc. Other times I used smart sun safety. Staying out of it from 10-2. Using hats and more protective clothing. This is the first summer that her vitiligo has not grown extensively. I can't say there is a connection between my different summer approach. But it is noted in my head as something to continue to watch as she gets older. And no, do not stay out of the sun completely!! Live life and have fun! Use rash guards at pools/lakes which protect the skin. Nobody wants to quit doing the things that are fun!! Including swim team! I do not know of any connection b/w chlorine and vitiligo. BUT, I would shower afterward. Her skin is already doing "funny" things (for lack of a better term), so I wouldn't want to leave those chemicals on all night long. Sunscreen: I have tried to get the all-natural stuff for her. But I have 3 other kids, so this has been more of a sometimes rather then a hard fast rule. Vitamins: play with what works for you. I would love to try gingko, but haven't yet as it really is not studied much in kids. Otherwise we use a good general vitamin. It seems like from my early research you want a vitamin with copper, zinc, B12 and folate. But honestly it has been a few years since I did that research. Lastly, relax. My philosophy is to teach her to be resilient and strong. I teach her how to answer the question, "What is on your skin?" So she is ready. She WILL be asked. And that's okay!!! I tell her it is okay for people to ask her. Then she can tell them some of the following:
1. It is vitiligo. It does not hurt and it is not contagious.
2. It is like having clouds on my skin.
3. God make me like this.
4. My cousin says I am tye-dyed. (True!)
As she gets older we can add to this list. But so far this has been enough. Her 2nd grade teacher was wonderful about telling the class that Paige and another girl who has type 1 diabetes are special people. That really helped. I have offered to go into her class and tell the kiddos what it is since kindergarten, but Paige won't let me!! And that's okay. The very best thing I can teach her is how to be her best self... vitiligo or not!!
My daughter has used Elidel, Protopic, Triamcinolone Acetonide, and Hydrocort...
Thanks. I called the dermatologist and her pediatrician this morning. I looked at protopic and at least it has been approved for use in children. I will have to look up the others you mentioned. I am concerned because the person we saw at the dermatology office was a PA and couldn't answer ANY of my questions. She basically handed me a pamphlet, gave me a prescription, and pushed me out the door.
I don't know anything about a chlorine and vitiligo correlation. My daughter's dermatologist told us to expose her skin to early morning sun for about 20 minutes, then use sunblock for the rest of the day. However, my daughter's vitiligo is spreading rapidly! Her blood work all came back normal, so I am not supplementing anything. Her pediatrician told us to try Vitamin D cream. I might try that on one spot and see if it does anything. After using the steroid creams for 1 year now, I am SO DISCOURAGED! I am already considering NO longer using them. Any areas that did repigment are already depigmented again. And they all list lymphoma as a side effect. I just think they are too risky and NOT really beneficial for my daughter...So NO improvement in 1 year's time...Talk about frustrating!
We started using Protopic and did not see any success. We switched dermatologists and we are now using Protopic and a steroid cream. We still are not seeing any results.
I have not heard that swimming in a pool makes it worse.
I read on here that Flintstones Complete help. We have been using them.
You can still be outside with vitiligo. We use sunscreen. We go to the beach twice a year for vacation. I will say that in the summer his vitiligo is noticeable since he gets tan and this areas stay white. In the winter it is hard to see.
This past year he had a lot of kids in school question what was wrong with his leg. We gave his teacher information before school started about vitiligo because most people have no idea what it is. About two months into the school year we had the teacher talk to the class because he was so upset that people kept asking him.
Please feel free to email me if you have any other questions at Switz984@fuse.net Good luck!!
Amy