PWS on whole right side of body - Vascular Birthmarks Foundation Forum
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  #1  
Old 07-05-2011, 06:01 PM
babyboy babyboy is offline
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Default PWS on whole right side of body

Hi,

My sweet baby boy was born with an extenstive port wine birthmark covering his entire right side from his arm to his little toes excluding his face. He also has the birthmark on his back (both sides). He was also born with a lesion next to his groin that doctors are still questioning-some are saying its a swollen lymph node while others are saying its some sort of malformation. We are going to the third specialist this month so hopefully this one knows what it is. I noticed that his PWS right leg is alot smaller then his left leg and mentioned it to the specialist however she said not to worry because the diffrence it not 2 cm or more. (this was measured when he was only 1 month-now he is 3 months old)
I guess I am wondering if anyone had a similar story -Does anyone know if the PWS (smaller) leg will ever catch up to the other leg? Will this get worse OR better? --Please help!!
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Old 07-19-2011, 03:35 AM
MrsAntilles MrsAntilles is offline
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I don't have any answers for you, but I am going through a similar experience right now. My son's birthmark is on his right leg from butt to ankle and he has bumps on his knee that bleed spontaneously. I hope you have luck with the newest doctor; it is so scary having no idea what your child's diagnosis and prognosis will be.

Stephanie

Quote:
Originally Posted by babyboy View Post
Hi,

My sweet baby boy was born with an extenstive port wine birthmark covering his entire right side from his arm to his little toes excluding his face. He also has the birthmark on his back (both sides). He was also born with a lesion next to his groin that doctors are still questioning-some are saying its a swollen lymph node while others are saying its some sort of malformation. We are going to the third specialist this month so hopefully this one knows what it is. I noticed that his PWS right leg is alot smaller then his left leg and mentioned it to the specialist however she said not to worry because the diffrence it not 2 cm or more. (this was measured when he was only 1 month-now he is 3 months old)
I guess I am wondering if anyone had a similar story -Does anyone know if the PWS (smaller) leg will ever catch up to the other leg? Will this get worse OR better? --Please help!!
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  #3  
Old 08-24-2011, 10:01 PM
Nic Nic is offline
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hi, I also have a PWS covering my right leg, which is about 1.5 cm shorter than my left leg. I first noticed the difference when I was about 12 (now 19) and it has not got any worse. Doctor gave me the option to have it surgically fixed but I refused because it doesn't bother me too much.
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Old 12-10-2011, 11:18 AM
ongcats ongcats is offline
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Hi!

My 3 month old daughter has extensive port wine stain on the whole right side of her body. (right arms, legs, butt, small area on the right chest and small area on the back). But none too on the face. Yea, noticed too that the right leg with PWS is "thicker" compared to the left one. Really disturbing. Are you planning to have pulse dye laser done on your infant? Where are you based?
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Old 01-20-2012, 06:09 PM
babyboy babyboy is offline
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Hi,
Just a few updates,
Little man is doing great; he had to have surgery because he had hydroceles in his scrotum (fancy word for fluid). I guess this is common for little boys but most of the time it goes away by itself. However, the specialist said he’s will not and we had to have surgery before he gets a hernia. He did great, mommy and daddy were a mess. Thank goodness, --that is over--

We finally found out what the lesion was -- a hemangioma -Doc says it will go away by 18 months—

His PSW leg is still smaller than the other one –Still not sure why, I guess we must wait and see…..

The doctor said that the laser would not work on little man because he has extensive birthmark, it would just be too painful.

To everyone that posted something, thank you-it really helped knowing I was not alone.

I am in Chicago, IL we are seeing a specialist at Children’s Memorial Hospital-he is great.

Any updates with your little ones… How is school going Nic?

I am sorry it has been soo long to write back, busy with the little man and working.
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