PWS present truly at birth? - Vascular Birthmarks Foundation Forum
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  #1  
Old 01-06-2006, 04:55 AM
karaokeyoga
 
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Default PWS present truly at birth?

Hi,

Our daughter was born a few weeks ago. In her very first baby pictures (first few days or so), the mark in question was very, very light (about the same colour as the also-present "angel kisses" between/above her eyebrows. But, a few weeks later, the "angel kisses" have faded significantly and the larger mark in question is now much darker.

I have temporarily placed a photo here: http://www.karaokeyoga.com/possible_pws.jpg

This photo is about a week old and the mark is darker now. From what I've read, PWS are present at birth, but I'm wondering if anyone knows if they're very dark right at birth?

We live in San Francisco and plan to see a specialist when we get back in two weeks, but are currently in Japan (where our daughter was born). Seeking information in advance.

Thanks!
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  #2  
Old 01-06-2006, 05:17 AM
QCBirthmark
 
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Default Re: PWS present truly at birth?

To me those look like PWS. Our daughter when she was born it seemed as if she had been bruised. A birthmark of any kind can have different degrees so to speak. I know this probably wasn't the answer you were looking for, but at least you are aware of it now. There is nothing you could have done differently either. (Sorry I was following my own train of thought when I had our daughter.) Have a safe trip home and please come back and update us. This community here is amazing!

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  #3  
Old 01-06-2006, 05:36 AM
hankbartenbach hankbartenbach is offline
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Join Date: Oct 2002
Location: Nebraska
Posts: 538
Default Re: PWS present truly at birth?

Hi karaokeyoga,

From the picture I personally can not see it because of my vision problems, but I do know of a good doctor at the UNSF. I have seen Dr. Ilona Frieden personally for my PWS. I would suggest getting her opinion. You can find all her contact info in the resource section at the top of the page under find a physican. Dr. Friedon's staff can diagnose your daughters condition properly.

Also, would like to point out how adorable your daughter looks in her picture. She looks very peaceful.

Hope this helps.

Hank
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  #4  
Old 01-06-2006, 05:53 AM
karaokeyoga
 
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Default Re: PWS present truly at birth?

Thanks for the quick replies. It's funny, I know Dr. Frieden because we took our older son to see her a few times (for excema). I will let everyone know how the visit goes.

Thanks again.
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  #5  
Old 01-06-2006, 04:10 PM
juliemn juliemn is offline
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Join Date: Sep 2004
Posts: 95
Default Re: PWS present truly at birth?

HI.....welcome!

What a beautiful baby!!!!

You've already gotten good advice, so I won't go there.


But to answer your question.....yes PWS can be very dark right at birth...it's very common for it to present this way. In fact, the diagnosis can be more difficult if it doesn't present this way. My son's PWS was not visible at birth.....thus it took quite some time (over a year) for the doctors to both listen to us and diagnose.

Congrats on your new baby!
Julie H

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Mom to Ben (multiple AVM's, PWS, SWS)
www.MeetBen.com
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  #6  
Old 01-06-2006, 05:40 PM
cknull
 
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Default Re: PWS present truly at birth?

Hi! Your daughter is gorgeous! What sweet little cheeks! Our daughter was born with pws on her right cheek around her eye and partly onto her nose. It was dark red at the moment of birth but amazingly lightened up slightly over the first year where it has remained the same color ever since. She is now five and a half. So in our case, yes the pws was present at birth. But the OB called it a stork bite, our family doctor called it a stork bite, and we were told it would fade over time. It never did. It wasn't until she was three years old and we moved across country and found a new pediatrician that recommended a pediatric dermatologist who then diagnosed it as pws. She was tested for Sturge Weber and was found to not have the syndrome. We didn't even know there could be such a problem from the birthmark.

It's good you're seeking help early!

Good luck and let us know.

Cindy
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  #7  
Old 01-06-2006, 11:37 PM
karaokeyoga
 
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Default Re: PWS present truly at birth?

I've posted a clearer pic:

http://www.karaokeyoga.com/possible_pws_2.jpg

This mark started getting very dark about a week after she was born. Prior to that, it was very light. Light enough that, the first hour she was born, it wasn't particularily noticeable.

Dr. Frieden is booked until March. Sigh. We are seeing a pediatrician (and likely a dermatologist) in Japan today. It's nice in Japan in that most doctors have a portion of their day (or a few times a week) for walk-ins. If you're willing to sit and wait in the waiting room, you can get quick access. This is even true for specialists.

I'll keep you posted. Thanks again for the info and support!
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  #8  
Old 01-07-2006, 12:22 AM
juliemn juliemn is offline
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Join Date: Sep 2004
Posts: 95
Default Re: PWS present truly at birth?

It certainly does look like a PWS....but a doctor that's knowledgeable of vascular birthmarks should be the one to diagnose it. I see that you already have a good doctor in San Francisco in mind.

Given it's location, if it is a PWS, screening for any brain involvement or Sturge Weber Syndrome might not be a bad idea in the future.

Don't hesitate to ask any questions here! This can be an overwhelming amount of information.

Julie H
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Mom to Ben (multiple AVM's, PWS, SWS)
www.MeetBen.com
jshiggie@gmail.com
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  #9  
Old 01-10-2006, 11:46 PM
karaokeyoga
 
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Default Re: PWS present truly at birth?

We're back in San Francisco next week to see the doctors. Is there any way to tell visually if SWS is likely to be present? If we scan, can the scanning be done at such an early age (she is three weeks old)?
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  #10  
Old 01-11-2006, 04:58 AM
nickbar nickbar is offline
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Join Date: Aug 2003
Location: Pacific Northwest
Posts: 1,078
Default Re: PWS present truly at birth?

I believe to diagnosis SWS an MRI has to be done with contrast...and the radiologist needs to know to RULE OUT SWS. Something to note that might put child at higher risk is if the stain is above and below the eye.... this is not necessary...but is a good pattern to have evaluated. The eye pressures need to be checked as well (every 6 weeks I've been told).

Keep us posted.

Corinne
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