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  #1  
Old 01-09-2003, 03:07 PM
travs mom
 
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Default My son's PWS & complications

Appreciate this site. My 20 yr old son was born with a Portwine Stain b-mark .Covers left eyelid,forehead and l-side of nose. He's never wanted it removed.Accepts it.Also has pws on 1/2 of his penis.On 12-15 he was involved in a atc accident: lots of fractures ect. Started bleeding internally on 1-4 lost over half of his blood.Tests showed no "open" bleeding.Surgery was preformed 1-8, and a PWS was found on lower intestine,and that section was removed.This is all new to us never any problems before.Anyone else ever experienced "internal complications?
Sign me"scared mom"
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  #2  
Old 01-22-2003, 12:45 PM
imported_missy imported_missy is offline
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Join Date: May 2002
Posts: 80
Default Re:My son's PWS & complications

Trav's Mom,

I have moved your topic to the appropriate board in the hopes that you will get more response to your questions.

I can see how internal complications can occur. Vascular birthmarks of any type involve so much blood that it's easy to see how internal bleeding could occur.

Let us know how Trav is doing and post again soon!

Missy
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  #3  
Old 01-22-2003, 07:31 PM
travs mom
 
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Default Re:My son's PWS & complications

Thank You for your post and reply Missy.
My son doing at least stable now. Bleeding wise. A stomach ulcer was also found, but internally bleeding was still a problem after ICU for too many days. Dr's feel a red cell blood problem( not multiplying). Further test will need to be done. Mounting medical bills due to Medi-cal refusing assist. have left us depressed here and mom feeling guilty over not dealing with the PWS at infancy. But at least 10 tests were done and nothing found. So.??
Would appreciate any insights out there!!
Thanks,
scared mom :'(
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  #4  
Old 01-22-2003, 08:45 PM
hankbartenbach hankbartenbach is offline
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Join Date: Oct 2002
Location: Nebraska
Posts: 538
Default Re:My son's PWS & complications

Hi Trav's mom

My name in Hank Bartenbach, and I am 20 years old and I have PWS accross my face mainly on the right side, I also have it on both eye lids and on my nose. I also have Vascular Malformations (hemangiomas) on my lip above both eyes and starting from the top of my forhead and goes all the way back to the crown of my head. PWS has gave me 70% hearing lose in my right ear because I have it in my right ear and I also have it on my top jums.

I got my marks from when I was still in my mother, when one of my internal crated arederys did not connect in my head and when I was still in my mother and the blood started to go thru my body it made the marks.

So far that I know I only have PWS on and in my head.
I have not had many complacations that where very serous, but I lived. If I ever got a good size cut on the right side of my head the doctors said they would not be able to stop it from bleeding.

I am very sorry to hear what happend to your son and I was wondering if the doctors every told you how he received his PWS.
I know it is a natural birth defect and that it is not gentic suposeably.
But it seems strange that he has it in different parts of his body like it was an ardery that split and went to different parts.
I also was wondering what state you live in because I live in Nevada and if you are close I would like to meet your son since we are the same age.
I am glad you let your son choose weather he wanted his marks removed or not because my parents did not give me a chance and I started laser treatment at the age of five not that I am on my own I still do laser treatment and now it has been almost 15 years.
My birthmark has not changed very much expecally where my Vascular Malformation is but everybody is different and they way they deal with it.

If you could email me back and we could talk some more I would like to here from your son in how he dealt with his PWS in his life and we can share storys ok.

I hope to talk to you soon.

Hank B
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