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  #1  
Old 07-22-2005, 11:37 AM
immys mum
 
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Default could they be pws

hi im new to this and i need some help i have a 15 mnth old daughter with a number of birthmarks. the largest covers her left leg and buttock and foot she also has club foot this side. the other marks on* her back and chest thses are quite large and smaller ones on her arms. most of the time they are a pinky red colour but if she gets slightly cold they go purple. They have mottled edges and disappear and then reappear when touched. when she was born was told they were a form of stork bite and would have faded quite alot by a year but they have not changed. she is a very pale skinned child so people notice them alot. anyone any ideas what they could be.
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  #2  
Old 07-22-2005, 04:44 PM
nickbar nickbar is offline
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Join Date: Aug 2003
Location: Pacific Northwest
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Default Re: could they be pws

It sounds like PWS and I really want to encourage you to have her seen by a vascular specialist. We can help you find a specialist if you'd like. Where are you located?

Also, if you would like to send pictures to the pws expert on the left of your screan, Dr. Stuart Nelson will be able to give you advice as well.

HUGS

Corinne
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  #3  
Old 07-22-2005, 06:24 PM
hankbartenbach hankbartenbach is offline
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Join Date: Oct 2002
Location: Nebraska
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Default Re: could they be pws

Hi,

I agree with Corinne. It does sound like PWS. The reason your daughter's PWS gets darker and lighter is because of her blood flow. When ever she is in the cold, angry, active, etc, etc. This can happen. It does not hurt and she probably does not even know it is happening. The only reason I know it is when I am at the gym and lifting weights in front of a miror I can see my PWS on my face get darker.

You should definetly get a vascular specialist to over look your daughter. In the resources above or ask the Dr. Nelson to the left.
Also you might want to ask Dr. Anne Comi the Sturge Weber Syndrome doctor on the left if she thinks your daughter could have SWS and Dr. Delfanian Klippel-Trenaunay (KT) in the legs where the PWS is.

I hope this helps and if you have any other questions please ask we are all here for you.

Hank


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  #4  
Old 07-22-2005, 08:13 PM
immys mum
 
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Default Re: could they be pws

thank you i am am taking her to our gp who specilizes in skin next week. know one ever seems to know much though. the thing i wondered is there not as dark in colour as pictures i have seen of pws can it b lighter pink. also could it have anything to do with her foot problem(she has club foot)
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  #5  
Old 07-22-2005, 08:18 PM
nickbar nickbar is offline
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Default Re: could they be pws

send an email to Linda Shannon hvbf@aol.com she is the president and founder of this group. Send her pictures if you can, she may be able to answer your questions as well has tell you options you have for treatment and if the club foot is related.

Corinne
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  #6  
Old 07-29-2005, 06:20 AM
juliemn juliemn is offline
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Default Re: could they be pws

The club foot can possibly be related to the birthmark.* Some studies have shown a correlation between the two.* You've already gotten great advice here...I just have to stress the importance of definitely finding the right doctor to help you with your diagnosis.

Good Luck!
Julie
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