New baby with port wine stain - Vascular Birthmarks Foundation Forum
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Go Back   Vascular Birthmarks Foundation Forum > Port Wine Stain Help > Port Wine Stain Help and Resources

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  #1  
Old 01-17-2004, 11:15 PM
jennietlee
 
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Default New baby with port wine stain

My first child was born in October 2003 with a port wine stain. It is on the right side of his body. On his back and down his right arm and hand. I am wondering what I should be doing about it at this point. I have no idea where to start. I have asked the pediatrician about it but he says that we don't need to worry about it at this time. I would really appreciate any advice, support, resources etc. Thanks. Jennie.
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  #2  
Old 01-19-2004, 04:29 AM
hankbartenbach hankbartenbach is offline
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Join Date: Oct 2002
Location: Nebraska
Posts: 533
Default Re:New baby with port wine stain

Hi Jennie, My name is Hank.

I would suggest going to the left of this page and under resources click on Find a Physician and then go to your state and find a derm doctor. Just to let you know there are defferent ways for remove PWS, most doctors like laser treatment. Personally depending on how deep the PWS is if the laser treatment will me effective. I have been doing laser treatment for 14 years and my marks are not all gone, but they are very deep into my pores.
Ask the doctor you find about the V-Beam Pulse Dye laser. I have used this laser and I recommend it. This laser is safe on infants and have heard and seen good things about this laser.

Good luck, and if you need anything else please let me know.

Hank
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  #3  
Old 02-12-2004, 08:47 AM
Puffy
 
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Default Re:New baby with port wine stain

Hi!

My second child, now 2, has a PWS on the right side of his body too, his is on his chest, arm, back and neck. I have found it all trial and error with creams, clothing, laundry detergents. but we are just trying anything at the moment. I had a lot of trouble finding any help with it, So I just checked out the internet under my local search engine to find ANYTHING in regards to it, I have even started a file for him and my 3 1/2 daughter to read later in life. I have asked friends and family to help me search, as I don't have much time to get on the computer during the day. I have read as many books and reference material on it, and so far i have quite a large file started. I find it hard to deal with some of the comments people say about it, but nobody even bothers to find out about it before jumping the gun, so to speak. I suggest you get on the internet and put in 'port wine stain' in your search engine and go from there, try the library, ask friends and family to help you look, just keep trying to find as much info as you can. It also helps you too, I now know it was NOT my fault for it being on my son.

but let me know if you need any help.

Sue 8)
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  #4  
Old 02-22-2004, 08:26 AM
petrina
 
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Default Re:New baby with port wine stain

my son is 10 now he has one on his face. all the doctor say you should have treatment before the age of 4 if possible as the mark grows with the child therefore needing more treatement due to the size you should look at the great ormond website there info on birthmarks are great. they also do the treatment. take the info to your gp and ask to go and see them and see what they say the younger the better the skin seems to react better when young
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  #5  
Old 03-06-2004, 10:07 PM
Lisa_99 Lisa_99 is offline
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Join Date: Mar 2004
Location: Madison MS
Posts: 48
Default Re:New baby with port wine stain

Jennie,

Where are you located ? have you check into laser treatment for the pws??

Lisa
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  #6  
Old 03-16-2004, 12:26 AM
isaaclee
 
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Default Re:New baby with port wine stain

Hi,
Our son, Isaac, was recently borned with significant amount of Port Wine Stain covering his head, eye-lip, back, chest and hands. Our doctor told us of Sturge-Weber and Klippel Trenauany that got us really concerned. What is the possibility of contracting SWS and KT if Port Wine Stain is present? Presence of Port Wine Stain will not necessarily translates to these complications right?
Thank you.
Concerned Parents,
Jake & Valeria
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  #7  
Old 03-16-2004, 07:20 PM
Lise
 
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Default Re:New baby with port wine stain

Jake & Valeria,

My name is Lise. I would like first to congratulate you for the birth of your son! I have an AVM of the lip and don't know much about PWS, but on the Sturge-Weber Foundation Web site, it says that 8-15% of individuals born with PWS have SWS. KT is still a much rarer disease (perhaps included in that 8-15%??). If you can't find here the information you're looking for, I suggest that you visit www.birtmarks.com They have a lot of resources and support for PWSers.
I hope this helps a little.

Lise
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  #8  
Old 03-31-2004, 04:17 AM
Lisa_99 Lisa_99 is offline
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Join Date: Mar 2004
Location: Madison MS
Posts: 48
Default Re:New baby with port wine stain

Jaka & Valeria,

in my understanding of the PWS causing complications, the birthmark itself may change over time, ie: get lighter or darker... you may want to be aware of complications can occur if there are vascular issues underlying..

Lisa
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  #9  
Old 03-31-2004, 08:04 PM
michelle o
 
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Default Re:New baby with port wine stain

My name is Michelle and my daughter Kailey was born on January 14, 2004. I just got back from the dermatologist that my pediatrician referred me to. She diagnosed my daughter with a pws. It is directly under her nose. she does not treat these herself but referred me to another doctor. I did make an appointment with this other doctor for April 29. I was wondering if there is any swelling that occurs after the laser treatment. Because of the location of her pws, I am worried it would affect her breathing. Also I am from pittsburgh and I wonder if there is anyone out there who has had experiences with Dr. Obagi? I am glad there is a website like this so I can talk to other parents who understand.

thanks, michelle
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  #10  
Old 04-02-2004, 05:22 AM
clairesmum
 
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Default Re:New baby with port wine stain

Hi Michelle,

Congrats on the birth of your daughter. My daughter Claire has pws mainly on the right side of her face, but it does go under her nose as well, but just on the right side. I have just looked at her photos post treatment and Claire has had laser spots done there, but there doesn't appear to be too much swelling, not any that would cause breathing problems. Claire's face does swell up quite a bit with the laser tx, but it is nearly back to normal within 24 hrs if not less.

Look into www.birthmarks.com also. Ask on the email forum about the doctors and someone may have seen that doctor and can tell you about him/her.

All the best
Catherine (claire's mum 18mo)
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