PWS on right arm....KTS?? - Page 2 - Vascular Birthmarks Foundation Forum
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  #11  
Old 06-20-2011, 10:39 PM
alecsmum alecsmum is offline
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Hi
My little man also has a pws on his right arm and hand. As with the others on this post, it gets spottier as it goes towards the shoulder. He also has it down the right side of his back and some on his leg.
We totally panicked when he was born, nobody here had seen anything like it. But it has been checked out and is not kts. Actually it was through reading posts on this site that I learnt most about the pws.
We elected not to treat, as it is unlikely that treatment will work for long. My son is now 7, plays alot of sport, and is happy with his hand, that also helps him tell left from right.
The only wierd thing is that cutting his fingernails on that side really hurts him, its like he has nerves in the nails (which can't be true but all the same)
We get people in winter that tell me he is too cold, and in summer that i should use sunscreen, as i am letting my son get seriously burnt! Can't win!
I don't notice the pws anymore, although i do check sometimes that his arm isn't growing longer than the other (its not).
So, be strong, get it checked out, but know also that it might only be a big pws, and that if so you can live with it just fine.
Good luck..
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  #12  
Old 06-21-2011, 04:22 PM
nickbar nickbar is offline
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If you ever notice him having pain on the pws side, swimming is a great way to help with pain/circulation. Cool water, not hot.
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  #13  
Old 06-29-2011, 09:44 PM
babyboy babyboy is offline
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Hi,

My baby boy is almost 3 months old and is also going to see Dr. Maccini in July.
- He has an extenstive port wine birthmark covering his right side from his arm to his toes excluding his face. (Plus his back-both sides).
- He has a mass/lesion next to his groin that doctors are still questioning--some docs are saying its a malformation and others are saying its a swollen lymph node. Hoping Dr Maccini will be able to tell us what it is???
- I also noticed that his right (PWS) leg is alot smaller then his left leg.

Has anyone had a PWS similar to my son's? Any advice? Please help since I am freaking out here.
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  #14  
Old 07-07-2011, 09:41 PM
olchan olchan is offline
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Quote:
Originally Posted by alecsmum View Post
Hi
My little man also has a pws on his right arm and hand. As with the others on this post, it gets spottier as it goes towards the shoulder. He also has it down the right side of his back and some on his leg.
We totally panicked when he was born, nobody here had seen anything like it. But it has been checked out and is not kts. Actually it was through reading posts on this site that I learnt most about the pws.
We elected not to treat, as it is unlikely that treatment will work for long. My son is now 7, plays alot of sport, and is happy with his hand, that also helps him tell left from right.
We get people in winter that tell me he is too cold, and in summer that i should use sunscreen, as i am letting my son get seriously burnt! Can't win!
I don't notice the pws anymore, although i do check sometimes that his arm isn't growing longer than the other (its not).
So, be strong, get it checked out, but know also that it might only be a big pws, and that if so you can live with it just fine.
Good luck..
Alecsmum:

can you please tell me if your sons pws has gotten any darker since infancy? so he has no signs of kt or any other medical issues associated with his port wine? lastly, he seems to have a very positive attitude toward his pws, which i am happy to hear. has he at all had any issues with it growing up?

Thanks for sharing
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  #15  
Old 07-07-2011, 09:53 PM
olchan olchan is offline
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Quote:
Originally Posted by babyboy View Post
Hi,

My baby boy is almost 3 months old and is also going to see Dr. Maccini in July.
- He has an extenstive port wine birthmark covering his right side from his arm to his toes excluding his face. (Plus his back-both sides).
- He has a mass/lesion next to his groin that doctors are still questioning--some docs are saying its a malformation and others are saying its a swollen lymph node. Hoping Dr Maccini will be able to tell us what it is???
- I also noticed that his right (PWS) leg is alot smaller then his left leg.

Has anyone had a PWS similar to my son's? Any advice? Please help since I am freaking out here.
hey, not sure if you saw dr. mancini yet or not. and if so, i hope all went well. Did you decide to treat your sons pws? i saw dr.chamlin who is in the group and we will do a test laser spot on my son when he is 6 months. continue it for another treatment and see what results would be acheived after the 2nd treatment. i will delay full treatment till he a bit older due to the proven study i read in general anesthesia adversely effect babies the first 3 years of rapid brain development. does anyone have any thoughts on GA?
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  #16  
Old 07-13-2011, 04:25 PM
babyboy babyboy is offline
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Quote:
Originally Posted by olchan View Post
hey, not sure if you saw dr. mancini yet or not. and if so, i hope all went well. Did you decide to treat your sons pws? i saw dr.chamlin who is in the group and we will do a test laser spot on my son when he is 6 months. continue it for another treatment and see what results would be acheived after the 2nd treatment. i will delay full treatment till he a bit older due to the proven study i read in general anesthesia adversely effect babies the first 3 years of rapid brain development. does anyone have any thoughts on GA?
Hi--
We are going to see the Doc in July--the 21st--hoping to get some answers quickly. Wow--I never would have thought that about GA--another huge thing to think about. I noticed you said you read this --did the doctors say anything ?? Do they have any concerns about GA?? Did they take pictures, measurements? anything like that? The other specialist told us to wait until he's at least 1 years old because he's birthmark is so extenstive. --hopefully this Dr. Mancini will be able to tell us more or give us other options.
I hope everything goes well for your little one and please post any updates.
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  #17  
Old 07-13-2011, 07:26 PM
olchan olchan is offline
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Join Date: Jun 2011
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Quote:
Originally Posted by babyboy View Post
Hi--
We are going to see the Doc in July--the 21st--hoping to get some answers quickly. Wow--I never would have thought that about GA--another huge thing to think about. I noticed you said you read this --did the doctors say anything ?? Do they have any concerns about GA?? Did they take pictures, measurements? anything like that? The other specialist told us to wait until he's at least 1 years old because he's birthmark is so extenstive. --hopefully this Dr. Mancini will be able to tell us more or give us other options.
I hope everything goes well for your little one and please post any updates.
Babyboy,

one of my specific questions i had for dr. mancini's group is about GA, and she told me not to worry, it will not delay brain development. it has not been proven or enough studies to shows GA hinders brain development in infants, especially during the first few years of rapin brain development.

anaesthesia hasn't been studied in humans to delay brain development but such a study is unethical and can't be done, but the animal study is enough for me to raise my concerns. however, i do know that it's commonly used in incidents where the benefits outweight the risk. im sure whichever decision you decide to make will be the right decision for you and your son. they didn't take any pictures and i specifically asked about KT syndrome. The doctor didn't seem to be concerned about KT(klippel trenaunay) at all, she just told me to wash that thought out of my head. And often times, it's really just a pws with nothing else linked to it. My advice is to get it checked out and not stress your worries too much. Things will be alright in the end. Good luck with everything.
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