A DISTRESSED MUM! Pls help. - Vascular Birthmarks Foundation Forum
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  #1  
Old 11-13-2009, 02:40 PM
henghweehwee henghweehwee is offline
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Default A DISTRESSED MUM! Pls help.

Dear all,

All mums & dads would have been through what I went through. From the moment your child is born with a birthmark that is totally alien to you. To finding out the possible sickness and problems that may come with PWS. Now, my baby Lauren is almost one year old. She has extensive PWS on half of her right face, stretching from her forehead to her neck, right hand and back and also covering a portion of her left face. She has glaucoma on her right eye and did one surgery and been using eyedrops to maintain the pressure in the eye. Lauren had her MRI done when she was 2.5mths old and was cleared of SWS. Her developmental growth has been great and on track. She had 3 lasers so far only on the right side of her face (since our derm said to do it in phases) and slight improvements (the marks are almost gone on her forehead) can be seen BUT on our recent visit to our dermatologist, he said to stop for a few years after her 4th treatment cos it will be difficult to pin her down. We always suggested G.A on her but he was concerned since she is only a baby. And, he seems more emotional than us while treating her.
I know all of you out there may have been asked these questions millions of times but pls...help me cos I know how it feels like to be laughed at as I do have a big patch of birthmark on my entire left thigh. Can you imagine my baby girl having to go through up to 10 times of mocking of what I went through???!!!
I truly will appreciate if anyone of you out there can advice me on the followings:-

1. The truly best laser treatments to treat PWS
2. The top dermatologist in the world (I heard they are in America). A few names will be great!
3. The top ophthalmologist cos our doc suggested a 2nd surgery and yet she cannot be sure of the success rate since glaucoma is a life-time illness.

Mums and dads, I really hope to hear from you all soon.

Regards,
Sharon
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  #2  
Old 11-13-2009, 03:43 PM
nickbar nickbar is offline
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Hello Sharon,
I am sorry you are having to deal with the stress of this all...especially the unknown. I will try to answer your questions below. I encourage you to keep doing exactly what you are doing... research and reaching out for support....it will become your life line.

. The truly best laser treatments to treat PWS: Yes, it is not just my opinion...but pws typically are best served with laser. There are not a lot of options.. other issues associated with pws may require other treatments...but to manage the pws, laser is the route. This can have long term benefits to avoid thickening, cobbling of the pws.
2. The top dermatologist in the world (I heard they are in America). A few names will be great!... yes, YOU can email Dr. Stuart Nelson directly from this site. He is located in California, but is very good at answering emails. Also, Dr. Geronemus in NYC is another expert in pws/laser treatments. If you email me I can also work on finding someone in your local area perhaps. I would still recommend you contact these two doctors for advice. Please provide them with as much medical detail as you can and provide any pictures.
3. The top ophthalmologist cos our doc suggested a 2nd surgery and yet she cannot be sure of the success rate since glaucoma is a life-time illness. I would talk with Dr. Aaron Fay in Boston (he is also on our ask the expert panel and can be emailed directly from our site.).

You mentioned doing laser under G.A, this is a common practice with children and adults with extensive birthmarks. My son did not have a pws...rather a large hemangioma spread across his right side of the face, neck, ear, eye, scalp..etc.. He was under g.a. for all of his laser tx. Dr. Nelson can answer any concerns you may have about g.a., A typical sedation is mild sedation and the child is under for a very short peroid of time.

If you have any more questions,please feel fee to email me at any time.
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  #3  
Old 11-13-2009, 09:00 PM
missy missy is offline
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The experts Corinne mentioned can be emailed through:

http://birthmark.org/experts.php

do get in touch with them.... they are all wonderful about answering questions!

Missy
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  #4  
Old 11-14-2009, 07:52 AM
henghweehwee henghweehwee is offline
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Thank you so much Corinne on the info you have furnished. I had dropped you an email and look forward to hear from you soon.

Regards,
Sharon

Quote:
Originally Posted by nickbar View Post
Hello Sharon,
I am sorry you are having to deal with the stress of this all...especially the unknown. I will try to answer your questions below. I encourage you to keep doing exactly what you are doing... research and reaching out for support....it will become your life line.

. The truly best laser treatments to treat PWS: Yes, it is not just my opinion...but pws typically are best served with laser. There are not a lot of options.. other issues associated with pws may require other treatments...but to manage the pws, laser is the route. This can have long term benefits to avoid thickening, cobbling of the pws.
2. The top dermatologist in the world (I heard they are in America). A few names will be great!... yes, YOU can email Dr. Stuart Nelson directly from this site. He is located in California, but is very good at answering emails. Also, Dr. Geronemus in NYC is another expert in pws/laser treatments. If you email me I can also work on finding someone in your local area perhaps. I would still recommend you contact these two doctors for advice. Please provide them with as much medical detail as you can and provide any pictures.
3. The top ophthalmologist cos our doc suggested a 2nd surgery and yet she cannot be sure of the success rate since glaucoma is a life-time illness. I would talk with Dr. Aaron Fay in Boston (he is also on our ask the expert panel and can be emailed directly from our site.).

You mentioned doing laser under G.A, this is a common practice with children and adults with extensive birthmarks. My son did not have a pws...rather a large hemangioma spread across his right side of the face, neck, ear, eye, scalp..etc.. He was under g.a. for all of his laser tx. Dr. Nelson can answer any concerns you may have about g.a., A typical sedation is mild sedation and the child is under for a very short peroid of time.

If you have any more questions,please feel fee to email me at any time.
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  #5  
Old 11-14-2009, 07:53 AM
henghweehwee henghweehwee is offline
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Join Date: Nov 2009
Posts: 3
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Thanks Missy!

Quote:
Originally Posted by missy View Post
The experts Corinne mentioned can be emailed through:

http://birthmark.org/experts.php

do get in touch with them.... they are all wonderful about answering questions!

Missy
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  #6  
Old 11-18-2009, 03:51 PM
RowdyBliss RowdyBliss is offline
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Join Date: Jun 2009
Location: Delaware
Posts: 29
Thumbs up

Can you imagine my baby girl having to go through up to 10 times of mocking of what I went through???!!!

I think many of us here can... yourself having a large birthmark, and many of us here as adults, too, having them - myself included.

I know it's difficult because you want to protect your little girl from every insult that people will fling at her, but it's so very important to stay cool and not treat the birthmark like it's an object of shame - because it isn't. Yes, these things make us different... but they're not shameful. They just are. In other words: ABSOLUTELY DO treat the medical issues and continue to treat cosmetically, but as she grows older, answer her questions, be sympathetic to her if kids make fun, teach her appropriate responses to offensive remarks, but also start to let her help make the decisions as to what she wants to do about it cosmetically. It sounds backwards, but it may make a world of difference to her self-esteem.

In other words, if you don't treat it as something shameful, she won't, either, and if she doesn't, most other folks won't - and she'll be able to roll with the punches better when the rude people and the mean kids inevitably say dumb things to her.

Again, just my two cents, but we were discussing this over on another thread (this is a good one --> http://174.120.2.174/board/showthread.php?t=3393) and I thought it was a really good point. If you read a lot of the adult stories there, it'll perhaps provide some insight as to how to help your daughter deal with the inevitable difficulties she'll face.

I wish you the very best success in everything you and your daughter do on your journey with her PWS.
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  #7  
Old 03-21-2010, 11:22 PM
kgregory kgregory is offline
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Join Date: Mar 2010
Posts: 18
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Sharon-
I don't have too much factual information on PWS, or types of lasers or anything, but I just thought it might be comforting for you to know that I was born with a PWS, and at age 15, it is almost completely gone. I've been getting treatments a few times a year since I was young (in fact, I'm scheduled for one tomorrow) and when I wear makeup over it, my PWS is almost completely invisible.

I know it might not help much with your concerns, but I thought it might be comforting for you to know that I was never teased in school (most kids just assumed it was a bruise, asked what happened, and were then very accepting of it) and I have a completely normal life Best of luck.
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