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  #11  
Old 08-13-2010, 11:10 PM
kaykay kaykay is offline
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i have posted a pic. I hope it helps !

I have a pws on the left side of my face but the eye thing is seperated from it as you can see. its on the left corner but mostly on the bottom eyelid. i have a small pws on the bottom eyelid, right size but its not very clear in this pic. apologies, camera phone only

my pws has always been dark in colour.


yeah, i WAS cute. pity i had to grow up lol
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  #12  
Old 08-14-2010, 10:13 PM
hypothesis hypothesis is offline
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Yeah, the pic helps. it's just a small one around your eye. And yeah,
you were cute before and you are strong now as you are here to help others.Thanks.

I have sent the pics to Dr. Nelson. Waiting for his opinion....
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  #13  
Old 08-15-2010, 01:29 PM
kaykay kaykay is offline
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aw shucks...happy to help if i can
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  #14  
Old 08-17-2010, 08:41 PM
xrox xrox is offline
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It has been a while since I posted in this thread so I'll give you an update. Firstly, we saw countless so called experts on vascular marks and all I can say is that nearly all of them scared me with their lack of knowledge. One so called expert told me it was a hemangioma and that salmon patches were only found in cancer patients??? (yikes). Then there is the story of my older daughter this past year which has turned into an absolute nightmare (see the AVM section of this forum) amplified by misdiagnosis after misdiagnosis. I've come to the point where I don't trust a word of any doctor anymore.

Anyway, I am my own expert now and only trust my knowledge. This is what I think about PWS versus Salmon Patch (stork bite, angel kiss..etc)

1 - Taking into account atypical presentations (location, color, size) there is no possible way to 100% diagnose a salmon patch.

2 - You must be patient and observe the progression over time to gain confidence in a more probable diagnosis.

Since there was no way to know for sure at a such a young age, we decided to screen our daughter for glaucoma to be safe.

Over the last two years, my daughters marks on her nose and eyelid have slowly faded from an atypical dark red to light pink. The one on her eyelid is very hard to see now and the one on her nose, while still very visible, has lightened considerably. These marks are following a course more typical of Salmon patches and we are gaining confidence in that diagnosis but are still not 100% sure.

With the possible AVM issues with my older daughter we became very concerned that the marks on my younger daughter were indicative of CM-AVM syndrome but I feel this is less likely a possibility.

Anyway, if you have any other questions please feel free to ask.

P.S.- You will probably read on the internet that salmon patches should dissapear by 1 year of age. This is nonsense IMO. The truth is that many typical salmon patches may fade to invisible by 1-2 years of age but the range can be from a few months to never completely. What you want to focus on is that the marks slowly lighten with age as thicker skin begins to grow and cover the vascular stain.
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  #15  
Old 08-17-2010, 11:03 PM
missy missy is offline
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Thanks for the update!!

I think you are right about salmon patches vs PWS. Good for you for trusting your instincts and doing your own research!

Missy
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