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-   -   PWS to entire right arm/right chest...anyone else???? (http://birthmark.org/board/showthread.php?t=3791)

prezy21 04-11-2010 04:53 AM

PWS to entire right arm/right chest...anyone else????
 
Hello..I am new to this group. I have a 1 month old who has a pws and was just looking for some reassurance. We have found a great dermatologist and she is starting laser surgery on our son next month. She said the sooner the better. I trust her very much. She also told me that she would be able to get rid of a majority of the pws except for his hand/lower arm. I was wondering what everyone else's experience was with the hand/lower arm. I am a little sad about this b/c I want him to be just like everyone else. I guess you can say that I am still trying to come to terms with all of this. I know I should be thankful that nothing is seriously wrong with him, but it just hurts my heart sometimes when I look at it. It's just so big. Thank you for any advice/help you can give me.

Kristen

missy 04-11-2010 02:51 PM

Good for you for finding a doctor you're comfortable with that will go ahead and start some treatment. Sooner is better.

Most of the young adults that I know of who grow up with a PWS on a limb are OK with it... except the girls who have it on their legs. They don't like bathing suit season.

:)

Missy

abatie 04-11-2010 03:32 PM

Kristen,

Although my child doesn't have a PWS (she has CMTC on the entire top side of her right leg) I can understand your feelings. I remember 9 months ago (yesterday) when my daughter was born I had the same feelings. At this point those feelings are long gone. They completely went away when she started having a great number of other medical issues that may or may not be related to CMTC. What I am trying to say is that just because your child has something that makes them look just a little different that isn't such a big deal when you consider what could be.

Your son will do great (and from other parents that I have talked to they say boys usually do better). You will realize as the time goes by you don't notice it. I see Becca's leg when I change her diaper but it isn't like those first couple of months when it was all that I saw. I remember keeping her leg covered with a blanket when we went places so nobody would see it. The other night I went to a kid carnival in our town. I knew most people already know about it (small town and all) and she had capris on. Nobody said anything and I didn't really notice anybody looking at it or saying anything (not even little kids!). I have even purchased some shorts for Becca. I don't know if she'll wear them a lot since she doesn't regulate her body temperature very well (her normal body temperature is very low) but I won't hesitate to put her in them because of her leg. If you are comfortable and open with your son's PWS you will find the others are accepting too! Take care and we will be thinking about you through this journey you are beginning.

tianasmama 04-14-2010 05:45 AM

Oh my goodness! I read your question and wanted to cry!!! I myself have a PWS that goes from the bottom of my spine down my right leg to the bottom of my toes... being a 5'11'' female... thats a BIG birthmark.. and I used to doctor with it alll the time. The specialist who did all 4 of my laser surgerys said he wished he would have seen me at 6 weeks old.. but also after the 4 laser treatments and all that pain they then told me that it was pointless for me to be doing this because a PWS is broken blood vessels on the surface that just keep filling up with blood. I understand you are worried as a parent that you want the best for your child but laser treatments really don't help, and once your son is a little older that birthmark isn't going to mean NOTHING to him, its a part of him and people will learn to accept it, yes kids can be cruel when he starts going to school but hey thats just kids... a birthmark is something special and i read on here somewhere that PWS occur in .3% of people... thats pretty rare. I can't change your mind for you but I remember laying on that table awake and how bad it hurt and they are basically just burning your skin for NOTHING... please do A LOT of research on this before you put a little baby through that hes not going to remember it but seriously a PWS is not that bad.

kaykay 04-20-2010 03:40 AM

that is quite a large birthmark ! perhaps you need to see a different doctor tianasmama. try something different. What works for some may not work for others.




I hope everything went well with the baby !

jpuritz 05-13-2010 03:43 PM

I have pws all down my right arm and hand, and I get the feeling that your son's life will be kind of like my own. Unfortunately, I've no idea what my parents did to raise me to accept my birthmark as part of who I am. All I know is that I felt, and still feel, unique. Truly unique. And that is not a bad thing. I think your son will do fine.

Jacob

missy 05-14-2010 12:34 AM

Jacob,

You have a great attitude!! If you ever DO find out what your parents did right, let us in on it! Probably, they took one look at you and fell in love... most times, that's all it takes.

Welcome!

Missy

sunfresh 05-18-2010 05:57 AM

tianasmama,

what is your doctor implying? that you should have seek treatment at week 6 old instead of now? that at 6 weeks there is a possibility to reduce the pws mark? Yes i ma aware that it is the broken vessel. So if the child seek earlier treatment, it can reduce greatly the surface from filling up with blood?

Talans Mommy 06-04-2010 07:38 PM

It will be okay.
 
Kristen,

First and foremost, everything is going to be okay. You have a beautiful little life that you have been blessed with. You will love and be loved by that child forever. That being said, I understand completely where you are coming from. My son was born 5 months ago with PWS covering his left foot/leg/buttocks and lower back. They are multiple marks (not just solid all over). There are a lot of them. At first, I just wanted to crawl in a ball and cry. Like everyone else, I want a perfectly normal child that will not be stared at or ridiculed. I thought long and hard about how I could have them removed. I worried whenever someone came to see him. I tried to keep them covered as much as possible at first. Then, I started doing research and seeing what things can be associated with PWS like his. We saw a Specialist that did an ultrasound which came back normal. We are now set to have an MRI done soon. They want to check for KTS although the limb is growing normally for now. Now, I just pray that he doesn't have KTS and its just PWS. Funny how it can always be much worse. But, I have come to terms with it. You will too. I can promise that. Now that its summer, I take him everywhere without pants or shorts. Sometimes people stare a little, sometimes they don't. But, it doesn't bother me anymore. I love him more than anything. And no matter what comes from this, we will tackle it head on. We are going to discuss laser therapy after his MRI is done. But, I will just be so greatful if he doesn't have KTS that it won't matter to me if he has the PWS for life or not. Good luck to you.


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