If your child has a PWS... - Vascular Birthmarks Foundation Forum
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  #1  
Old 12-02-2011, 04:26 AM
swaltjen swaltjen is offline
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Default If your child has a PWS...

Hi Everyone!

It's been a while since i posted. I have a 10 month old with a PWS on his right leg (from his hips/buttocks down to his toes). He was diagnosed back in July and the dermatologist wanted to start laser treatments. My husband and I decided to hold off for a while and wait and see what happens. So far I haven't really noticed any changes (yaaay!!) and we haven't been back to the "Vascular Anomolies Program."

I know every person is different, but I was wondering what changes other parents saw in their little ones' PWS over time. Of course I will continue to monitor it and take him back to the doctor if/when we notice any changes.

I hope everyone is in the holiday spirit! We are looking forward to our first Christmas as a family of four!

Sarah
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  #2  
Old 12-02-2011, 11:34 AM
missy missy is offline
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Hi!!

Thanks for the update. I know other parents will be in soon to give you their experiences. From the adults that I know with PWS, some have problems with cobbling and blebbing later in life. For them, it's not a cosmetic issue, not a matter of trying to "fade" the PWS. Laser therapy helps to keep those problems at bay. For such a small child, you may not see many changes anytime soon, but it's good to think about being proactive and avoiding problems later.

So keep in touch with the specialist you've seen, so that you will have a doctor when you need one, rather than having to start new with someone.

I'm such a scrooge, though ... the holiday spirit doesn't hit me until 5:30 am on Christmas morning! Perhaps it will come early this year. I like the family time, though. Hope your new one has the best first Christmas ever!!

Missy
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  #3  
Old 12-03-2011, 09:24 PM
KatieG KatieG is offline
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My daughter has a port wine stain/vascular mark on her leg. It goes from the bottom of her foot up to her knee in a spotty pattern. She is currently on her 2nd laser treatment (at 19 months old). The reason we went ahead and did it now was for several reasons, mostly being that the dr. told us that the younger skin responds better to laser treatments, etc. I also wish I could predict the future and know whether or not the marks would bother her or not when she gets older. We decided to go ahead with treatment since we already had a hemangioma removed last year by this same doctor and trust him fully.

Let me know if you want any info about the laser treatments! Katiegalvin02@yahoo.com
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  #4  
Old 12-04-2011, 01:21 AM
kaykay kaykay is offline
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as an adult i definitely wish i had treatment to remove it as a child. PWS is on my face, scalp, ear. the colour doesn't bother me as much as the growth. it has thickened alot of the years and i have some health problems i suspect is related to that.

I actually nearly broke a jaw for a comment a man made about 2 weeks ago. Oddly enough it had nothing to do with my birthmark but a very obsense comment he made that no woman should hear except from their partner. I would have to say after all the years of hearing stupid comments about my birthmark and trying to restrain my verbal and physical reactions, it kinda helped pull back my hand that was already in his face. cussed him and left. I admit i was very much in his face with my birthmark and don't think he knew what to do but fumble an mutter as i had him backing up. I mean i snapped. I take enough crap. didn't need that too. idiot said it in my good ear LOL. he shoulda picked the left one, i wouldn't of known LOL
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  #5  
Old 12-08-2011, 11:16 AM
fromhungary fromhungary is offline
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HI!

My doughter is 3 years old. She has PWS on her left side, left leg. No changes since her birth. It change colour when she has cold, or when she has fever etc.

In our country, there is no laser treatment for young children. So we can just wait, and hope to have "just" cosmetic problem, and no bleeding etc.
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  #6  
Old 12-10-2011, 11:12 AM
ongcats ongcats is offline
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Hi! My 3 month old daughter has extensive port wine stain (PWS) on her right extremities (whole right arms, legs, butt, a small patch on her chest and a small patch on her back). Luckily, none on her face. Anyway, pedia derma here in Canada refused to treat her as she is still too young and that PWS on the extremeties are resistant to pulse dye laser. Hearing that really made my heart break. I know it's just aesthetic but we still want to atleast try to do everything we can to help her.

Any moms here who had their baby's treated? Would you recommend it to be done sooner or later? Was the laser successful? Is it expensive? Is there a possibility for port wine stain to "lighten" on its own? Help any info will be a big help for me.
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Old 01-06-2012, 10:16 AM
JaCkMarTIn JaCkMarTIn is offline
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The reason we went ahead and did it now was for several reasons, mostly being that the dr. told us that the younger skin responds better to laser treatments, etc. I also wish I could predict the future and know whether or not the marks would bother her or not when she gets older.
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  #8  
Old 01-25-2012, 08:03 PM
lumpyloaf lumpyloaf is offline
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My 4 year old son has PWS on his right leg from hip to toes. He frequently complains that leg hurts. It has even reduced him to tears. Has anyone else's child had similar complaints?
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