Help with newly diagnosed son's mood.

Hello all. I am the mother of an 18 year old who was recently diagnosed with Vitiligo. I am impressed with the strength of the members of this site and hope to use some of your inspirational stories to change my son's mindset.

My son had a small white spot on his inner left elbow for the last year or so. After a recent trip to Mexico and tons of fun in the sun, he came home with a large patch on the left side of his abs, and a patch on his inner left forearm. Trip to dermatologist where we were hoping for a tinea versicolor diagnosis turned sour when he announced my son had Vitiligo. The dermatologist had a frankly shitty bedside manner and just told my son, sorry, no cure, no real treatment. You can "try" this ointment but the only article I read about how effective it was, was produced by the manufacturer so I don't believe it will work. He prescribed Protopic, ordered a thyroid test and sent us on our gloomy way.

After our appointment we researched and researched. I put my son on a vitamins that include a Super B complex, Zinc, D-3 and copper. My son is using the Protopic twice daily and we took some pictures of all his affected areas to track progression. Thryoid test was done today and we await results.

My biggest problem is the psychological affects this is having on my son. He hyper inspects his skin constantly and comes to me numerous times during the day to look at a new "spot" he found. He is afraid of it spreading to his face, or hands and says he can't go to college if it spreads as he will never want to leave the house. I think the dermatologist erred in giving no hope to an 18 male who has his life ahead of him. I believe that providing something active that my son could do to help stop progression, giving him a role in his treatment is important. (Ahhhhhhh that d*** doc!)

My ex's sister has vitiligo. My mother and myself both have thyroid problems. My son has several halo nevi on his back. He also broke his left arm in Sept 09 and had surgery to put in a metal plate. So..... genetics link, possible thyroid imbalance link, halo nevi link, trauma to the skin link. One thing that throws a small kink.... we believe it's segmental vit because he only has patches on the left side of his body. The one's on his abs cut right down the middle of his chest.

Any advise on how to get my son to look on the bright side of life? I've mentioned lots of things that "could be worse" but they fall on deaf ears.

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Thanks Courtney and Reza! I am working on getting him to focus on his golf talents. I've tried to get him out of funky moods by allowing him to coach me on my golf game. I would like to find a better doc than the one we saw, and my son agrees. Although this doc has received top honors in colleges and his residency etc, he falls short how to break potentially bad news to a young kid. First few days after diagnosis was really rough. My son just wanted to punch walls. I told him that we were in this together and we will find ways to handle it, no matter what course it took.

So looks like I need to just let him work through some of his fears, let him show me as many spots as he thinks he can find. I am constantly showing him my arm which has uneven skin tones and remind him that even non vig skin can be blotchy. He was glad to find out that a pro B-ball play Racheed Wallace has Vit.

What a journey we have ahead! But reality is.... there are a lot of worse things in the world that can make you "sick" besides Vitiligo!

Thanks Again

Replies

William M July 5, 2010 at 3:01pm

Lori, I just was told by my dermatologist that I have Vitiligo roughly the same way, although I am 38 and your dr should have had a better approach. I am sure if it was his son he would have more info. and more hope!! I agree with everyone and let him talk and show you. I am probably driving my wife nuts with all my comments and questions. When I look at my spots I am sure they look a lot worse to me then what others see. Hopefully your son gets feeling better and joins up here, I am a big sports fan and would love to divert myself to talking about anything else then Vitiligo.
- Lori > William M July 5, 2010 at 5:41pm
  
  Thanks, it's funny because he said that in order for him to be able to sleep at night and not "think the worse", he names all the players on his favorite teams. Nuggets, Avs, Bronco's, etc.. He is a talented and avid golfer so he also tries to replay or plan perfect shots in his head as he lays in bed and tries to get to sleep. We're still trying to puzzle through the halo-nevis and vitiligo similarities and differences. I really believe he's got segmental vit,and when he finds a halo on the non vit side we end up throughly discussing why his halo is not vit. But his thyroid came back as normal so that helped his outlook alot. Not to mention a 300 yrd drive on the 18 hole of our local golf course! That kinda makes skin problems disappear..... know what I mean?
Nadika June 30, 2010 at 5:32pm

You sound like a great MUM - Lori :-) Your son is fortunate to have a supportive mum like you. You remind me so much of my Mum - who was my "rock" when vitiligo appeared at the age of 5. My dad and siblings were of no help :-( Yes, let him show you as many spots as he can find! Let him punch walls too! It is far better to punch walls - than to keep all emotions bottled up inside. Ask him to join here. And tell him that Protopic could work for him. It has worked for others. I see results from it too - though slow. A combination of Protopic and a mild steroid cream works too. Tell him to go out in the early morning sun for about 10 - 15 minutes a day(before 8 AM). Sunlight at that time is good for us. Tell your son to disregard what that idiot-of-a-doctor said. People like him should not become doctors. They are a disgrace. I have faced my share of them too !! Good Luck !!!
- Lori > Nadika July 1, 2010 at 7:12am
  
  Thank you Nadika. It is true that venting will be much healthier for my son than trying to hide his frustrations. I don't want him to think that not showing emotion makes him "a man". I am nagging him about taking his vitamins, applying the cream. He may roll his eyes but when I remind him I'm just doing my job as a Mom, he smiles.
  
  I'm going to try to get him on here. I may get in a little trouble for posting the pictures of him but he hopefully will get over that quickly! If you're reading this son, I'm here posting cause I love you and want to help you through this!
Lori June 30, 2010 at 4:03pm

Thanks Courtney and Reza! I am working on getting him to focus on his golf talents. I've tried to get him out of funky moods by allowing him to coach me on my golf game. I would like to find a better doc than the one we saw, and my son agrees. Although this doc has received top honors in colleges and his residency etc, he falls short how to break potentially bad news to a young kid. First few days after diagnosis was really rough. My son just wanted to punch walls. I told him that we were in this together and we will find ways to handle it, no matter what course it took.

So looks like I need to just let him work through some of his fears, let him show me as many spots as he thinks he can find. I am constantly showing him my arm which has uneven skin tones and remind him that even non vig skin can be blotchy. He was glad to find out that a pro B-ball play Racheed Wallace has Vit.

What a journey we have ahead! But reality is.... there are a lot of worse things in the world that can make you "sick" besides Vitiligo!

Thanks Again
Reza June 30, 2010 at 7:01am

I agree with Courtney. We are more than our skin. My mom is also a huge anchor for me. Even before vitiligo she had my back (even when I was wrong). So yeah... be that anchor. :)

I would also recommend you and your son read this thread.
(http://www.vitiligofriends.org/forum/topics/having-vitiligo-for-over-a)

I only knew one other person who had vitiligo, and we didn't talk that much about it. I just joined this community and I have to say it feels really good communicating with other people with vitiligo. I wish I had done it sooner!

I wish you guys the best. Stay healthy, positive and confident!

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