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Old 06-22-2003, 06:38 AM
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Default Should we retreat?


My son Adam is four years old and has had 14 pdl surgeries. He has not had one for a year now. We decided to halt treatments last year because Adam was aware of and disliked the bruising after surgery, and we wanted to avoid attributing any negative connotation at all to the birthmark. His plastic surgeon felt that we had made great progress, at least 75%, and that stopping would make sense.

The problem is that we are definitely noticing a regression of the stain, and we don't know whether or not to proceed with touch up treatments. Does anyone have any suggestions about how we can broach this with Adam so that he won't perceive his pws in a negative way? Any suggestions at all on how to deal with his awakening to the fact that he has a pws would be great. He knows he has a birthmark, but I don't think he really sees it, which is wonderful. I want him to accept it as part of himself. However, I am not naive to the fact that as he gets older and as he interacts away from home, this will become more difficult.

Thank you so much!

Adam's Mom
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Old 06-22-2003, 07:22 AM
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Default Re:Should we retreat?

First, let me say you are very lucky to be seeing such great progress. I had 11 laser treatments on my pws on my arm and there was no improvement...all I got was a bunch of scars.
I am 18 years old, and I know exactly what you mean about Adam being aware but not really realizing what it is. My birthmark really didn't start to bother me until a couple years ago, but I have always known about it. It has only been this year that I don't like wearing short sleeve shorts because of it.
My parents have always told me my pws is part of me and doesn't change me as a person, but as I get older, I just wish I could be "normal". All you can do is tell your son that his birthmark is just another part of him, that's just how God made him. Granted this doesn't make me feel a whole lot better, or give me the confidence to wear anything that shows my arm without my cover makeup on, but I know it could be a lot worse.
I didn't start have laser treatments until I was 12, and I wish my parents had started it when I was younger. The bruising and bandages after a treatment were HORRIBLE to look at. People would always ask me if I broke me arm or some of the purple would show and gross people out. (I had to keep the area covered in gauze until it healed). If you have had any progress AT ALL with laser, I suggest you go all the way while Adam is still young. It will become a much bigger deal later in life.
The one piece of advice I would give Adam when he is older is...anyone who makes comments or makes fun of your birthmark, isn't worth worrying about. I have had a lot of people try to insult me with that, and it just doesn't get much worse than that. But you can't change that, just turn the other cheek and move on with life.
I wish you the best, and if you have any other questions feel free to e-mail me or write back on these boards.
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Old 06-23-2003, 12:33 AM
hankbartenbach hankbartenbach is offline
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Join Date: Oct 2002
Location: Nebraska
Posts: 533
Default Re:Should we retreat?

Hi Adams mom, my name is Hank I am a 21 year old that has several PWS's on my face and head. I have been doing laser treatments for about 14 years now. I am assumming your son's PWS is some where noticable to people. In this case you are in I would suggest being straight forward with your son because when he does start school he will be made fun of and teased because all of the other child will think he is different. Trust me I have been thru it. I garrente that he will come home some days crying because of the kids at school, but that just means you and your family will have to love him more. If your son does not know what he has it will make the matter worse in the future because if another kid asks him what it is your child can educate them so they will not be affrad to be friends. I would have to say Elementry school was the worst for me because the children in my class did not know what to think but as I got older the saw it was not going any where and I became popular. The only bad part about high shool was I did not have very many relationships with girls as dateing, most of them where just friends. Just to give you a heads up for the future.
But back to my point I strongly suggest teaching your child about what he has so he can understand it and he will benfit it in the long run.
I am sorry to be the one to tell you but depending on how deep your son's mark is the chances that you can get it completely removed. If you can you have the chance of it coming back. Everybody is different so there is different cases with different people. I think you should at least try to go all the way, but let your son decide how far he wants to go. My parents did not let me decide so I made it really hard on them until I understood what they where tring to do. Put it this way your son is different for a reason because God has chosen him for perpose on this earth. He would not be here if this was not true. He is just more special then other children. He also will be more open to things like the way people look for instence. He will be less judgemental also.

If you would like to talk more I would love to, if you have any other questions I would like to here them.
If I do not here from you good luck and I have faith in what you will chose to tell your son.

Hank B
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