Newly diagnosed 5 y/o - protopic question - Forum

Hi everyone!

My name is Jennifer and I am a mother to 5 y/o Jack. Jack was just diagnosed with vitiligo a few weeks ago. I noticed some spots around his mouth a couple moths ago and they seamed to get darker and darker. I finally took him to see his pediatric doctor and she referred us to dermatology. The dermatologist turned off a light and shone a black light all over his body and said that he had vitiligo. I am familiar with vitiligo as I have know a few people with it in my life and I am a nurse myself. I thought it was an odd diagnosis because the spots around his mouth look hyperpigmented (darker) to me. The doctor explained that my eyes were focusing on the tan areas of his mouth that still had pigment. He then turned on the black light and showed me the bright white areas with no pigment. My son has very pale skin as he is caucasion - half Irish and half Swedish. Has anyone else ever heard of this with vitiligo? Darker spots next to lighter spots? Does that sound right? I guess I have my doubts...

Jack is scheduled to start UVB treatments 2 times a week for 2-3 months on July 9th. We are also using protopic 1%. I was just reading in some posts that the 1% is the adult dosage. I need to call the doctor about that as it appears we should be on the .03% unless he preferes the stronger dose for kids as well. Also, has anyone very young ever noticed improvement with the protopic alone? I have been using it on him for 3 weeks and I swear things look better. Is this even possible?

I did notice a new developement last week. He now has a pea size white spot on his foot. It maybe from a scab or mosquito bite - I am paranoid about every spot on his body.

Thanks for listening! I am sure I will have lots of questions for Jack!

Jennifer

Hi Jennifer. I think I read somewhere that what you're seeing is called KALIEDO vitiligo. It's where the skin tends to be various colors. I'm African American and I swear my skin is at least six shades of brown PLUS white. I am 34 years old and was diagnosed at the age of 10. I received treatment in the beginning with some type of cream but wasn't successful. I have not received any type of treatment in 24 years because I chose not to. I do care a lot that there's no cure but I don't want to spend my time with possibly unsuccessful treatments. As lazy as it may sound on my part, I love to see the results that others are seeing with their treatments. Hopefully one day I will view this differently. Good luck to your child and hang in there!!

Replies

Gia July 7, 2012 at 6:53am

It could be vitiligo. I have only heard of hyperpigmentation happening around the edges of vitiligo patches. It could also be other things. When the doctor shown the wood's light (the black light) on your son's skin the patches would have shown up a yellowish green if it was tinea versicolor (a fungus). Tinea versicolor can cause dark patches and white patches.That is about all I know on the subject, but I hope it's useful!
Christie July 7, 2012 at 5:34am

My son was diagnosed at 8 and he has always been on the higher dose of Protopic. We saw a lot of repigmentation with Protopic alone, but it took a good 6 months. We also are now doing light treatments. Good luck to your son!
Karen July 7, 2012 at 2:03am

Hi Jennifer. I think I read somewhere that what you're seeing is called KALIEDO vitiligo. It's where the skin tends to be various colors. I'm African American and I swear my skin is at least six shades of brown PLUS white. I am 34 years old and was diagnosed at the age of 10. I received treatment in the beginning with some type of cream but wasn't successful. I have not received any type of treatment in 24 years because I chose not to. I do care a lot that there's no cure but I don't want to spend my time with possibly unsuccessful treatments. As lazy as it may sound on my part, I love to see the results that others are seeing with their treatments. Hopefully one day I will view this differently. Good luck to your child and hang in there!!
- Gia > Karen July 7, 2012 at 6:43am
  
  I have also heard this referred to as trichrome vitiligo in case you have trouble finding info on kaliedo vitiligo :)

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