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  #1  
Old 09-04-2007, 01:58 PM
tiny dancer tiny dancer is offline
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Default pws on leg

hi, im new here. my 15mth old daughter has a pws on her left leg. it starts at her thigh leg joint and covers in patches most of her front thigh,at the knee it goes around the back and half way down her calf where it stops. she also has a tiny spot just above her pelvic bone(just by the top of her nappy). its pale pink, not raised,just feels like the rest of her.and there isnt any diff in size to the other leg . kinda looks like someone splashed it on her! we have seen her dermatologist and she said she was a good candidate for laser treatment. it will be starting when she is around age 3. im wondering if there is anybody else here who has a birthmark like my daughters? and if laser treatment made any difference??
ive added a pic to my profile pic too.

Last edited by tiny dancer : 04-07-2009 at 08:28 AM. Reason: to add a picture
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  #2  
Old 09-04-2007, 04:48 PM
missy missy is offline
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Other parents will chime in soon, but I will say that laser treatments help a lot. It not only keeps the pws from being so red, but will help LATER in keeping down the incidence of cobbling and bleb marks.

There are other people on this board who have a birthmark like your daughter's.

Missy
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  #3  
Old 11-15-2007, 11:38 AM
tiny dancer tiny dancer is offline
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please anyone??
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  #4  
Old 11-16-2007, 07:32 PM
Lisa_99 Lisa_99 is offline
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my daughter is 18, was born w/ PWS and KT syndrome- She has rec'd PDL laser treatment off and on for a few yrs. I will answer what questions I can -- email me direct -- as I don't check this site daily. My email is : lisa.williams99@gmail.com I am in Mississippi

Lisa
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  #5  
Old 11-22-2007, 02:32 AM
Aussie legs Aussie legs is offline
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Hi tiny dancer,
My name is Ann I'm 38 and also have birthmarks on my legs, your daughter is so lucky she has been born when technology is around and will make a difference, i had to wait until i was in my 20's before i could start treatment, it has taken a while but its working (slowly). The only reason my treatment has taken so long is because as I've got older my birthmark has got darker so its great to start young, i'm sure you will see results, it might take a few treatments so dont exspect to see fading straight away. Good luck
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  #6  
Old 12-11-2007, 04:01 AM
ReeseKaiJinsbigsis ReeseKaiJinsbigsis is offline
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Hi,

My name is Monica. My little sister is adopted from China, and has port wine stain on her legs, pelvic area, and her face. Before we adopted her, she was sponsored through an orphan-relief foundation. They saw to it she had laser treatments before we even got her, before they even knew if she would be adopted. They only worked on her face because everything else can be covered. I have pictures of her from when she was about a year old after her first laser treatment. So I'm left wondering why your doctor wants to wait until she's 3?

Reese just turned 3 in October. She had her 6th laser treatment on her face in September-ish, and her first treatment on her legs that same day. The blisters were awful on her legs. Her face barely reacted (but has now leveled out and faded significantly), but her legs...poor baby. She still has light colored spots where the birthmark faded where the laser hit, but the spots haven't faded into each other to make an overall lighter birthmark except around the edges. I say horrible blisters, and I know that isn't encouraging, nor more likely to make you want to start early. But from what I understand, the earlier you start, the lighter it can get and the less issues you have with it.

Feel free to go look at my blog. If you go back to that time frame, you can see pictures from her treatment.

Good luck with your girl. Feel free to email me or message me, if you want.

Monica
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Monica
Big sister to Reese KaiJin
Adopted May 2007 from China
Reese is living with PWS, congenital glaucoma, and Type 2 Sturge-Weber Syndrome

Journey with Reese
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  #7  
Old 01-23-2008, 03:50 PM
tiny dancer tiny dancer is offline
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hi thanks for all the replies. to monica, the reason that treatment is starting at 3 is because her pws is on her leg, she isnt seen as priority(ie its not on her face or a highly visible area). your sister sounds like a brave little girl. im not feeling too apprehensive now as i feel that if i dont go ahead with the laser then im not giving her the best choices available. and it would brake my heart if she came to me when older to ask why i didnt do anything for her.
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  #8  
Old 09-14-2008, 07:29 PM
TomD TomD is offline
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My daughter is 9 months old with a large stain that covers around 50% of her right leg and butt cheek. We have seen 2 specialists. The first said that laser treatment is ineffective due to the vascular pressure in the legs as compaired to the upper body. His name is Dr Burns in Dallas and he is very well respected in the PWS field. We have since seen another specialist in Austin, Dr Levin. He insists that we can see good results from laser tratment, however agrees that they will require twice as many to get the same results as a facial stain. We have not yet decided to move forward with treatment, so if you do please get in touch with me and let me know how it goes. We spent a good deal of time with each doc and asked a lot of questions. Please feel free to contact me if you want further details. Good luck,

Tom
tom.dorsett@gmail.com
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  #9  
Old 09-16-2008, 03:48 PM
JSchnickel12 JSchnickel12 is offline
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Just remember, if the laser treatments don't work well, don't panic. My parents decided not to do laser treatments on me because they were expensive at the time and very painful. I'm glad they didn't. I'm 25 now, and yes I struggled with my birthmark here and there in my life, (covers a large majority of my left leg), but it has also been something very special to me. It's made me stronger as a person and I've learned a lot of lessons with it on accepting myself and growing stronger as a person. I wouldn't trade a second of my life to have any kind of laser treatment done on it. I feel it would've been a waste of my time, money and pain. So my advice to all parents out there considering laser treatment, just remember its not what you think that matters most, it will be what your children think of their mark and themselves. I know we all want to protect them, but try not to treat them like they are so different, that they start to believe it. I don't think my parents even brought up that there was a laser treatment option until I was about 8 or 9 years old, and my dad asked me, "do you wish we would've done it?" and I said "no, my mark is a part of me". Just a little advice to hopefully bring some relief that things will be okay if they don't go as planned.
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  #10  
Old 01-05-2009, 10:02 AM
tiny dancer tiny dancer is offline
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hi thanks again. as this is the yr my daughters treatment starts, i just said i will post again. my daughter lately is very aware of her birthmark, she is almost 2yrs 8mths now. she calls it her 'market'! haha she is funny. if you ask her whats it for she says, 'dunno its just my market!!. we have about 5mths before her treatment will begin ,we have no ideal result, we are just looking forward to whatever the outcome.
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