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-   -   SWS questions (http://birthmark.org/board/showthread.php?t=3292)

xrox 01-23-2009 02:03 AM

SWS questions
 
Daughter has a PWS isolated on her upper left eyelid along with a small PWS on her nose.

I am wondering who to believe when I read contradicting evidence on SWS/Glaucoma when eyelid is involved.

VBF site says the following: "Various experts’ report that nearly 50% of all infants diagnosed with a port wine stain on the eyelid will be at risk for glaucoma. Involvement of the upper eyelid has the highest association with SWS"

While the largest study to date on the subject says the following: "All patients with eye or CNS involvement had lesions on the eyelids; 91% of these had both upper and lower eyelid involvement, whereas 9% had only lower eyelid involvement. None with upper eyelid involvement alone had eye or CNS involvement"

Either way I want our daughter screened for glaucoma and SWS but cannot seem to get any help in my area. Can anyone recommend a SWS specialist in Ontario Canada? Our daughter is 6 weeks old.

missy 01-23-2009 11:38 AM

The problem with studies associated with these syndromes is that the syndromes are so very rare, it's really difficult to find enough people to test!!

Could you post a link to that study or tell me where I can find it? I'd love to read that and I don't think I've stumbled across it yet. I'd really like to send it to Glenda and see if she knows about it.

In the meantime, though... what has your pediatrician said regarding glaucoma screening? It's not like a screening for glaucoma is expensive or invasive... it's annoying, yes. We're all supposed to get our eyes checked anyway. What is the objection?

Missy

xrox 01-23-2009 08:20 PM

Quote:

Originally Posted by missy (Post 16268)
The problem with studies associated with these syndromes is that the syndromes are so very rare, it's really difficult to find enough people to test!!

Could you post a link to that study or tell me where I can find it? I'd love to read that and I don't think I've stumbled across it yet. I'd really like to send it to Glenda and see if she knows about it.

In the meantime, though... what has your pediatrician said regarding glaucoma screening? It's not like a screening for glaucoma is expensive or invasive... it's annoying, yes. We're all supposed to get our eyes checked anyway. What is the objection?

Missy

It was read from the clinical portion of the following
http://emedicine.medscape.com/article/1177523-overview

Our pediatrician and family physician both said it was a harmless vascular birthmark that should go away with time. I'm assuming they mean salmon patch but it sure looks like PWS to me (dark red). I would really like an expert to diagnose it as PWS or salmon patch since it is such a sensitive area regarding SWS and glaucoma.

I can post a nice picture of it later tonight.

xrox 01-24-2009 03:43 AM

3 Attachment(s)
Here are some pics of our little angel. Birthmark is on the left eyelid (right eye in picture) and red dot on the nose as well. The second picture was took in sunlight which brings out the red color better.

hypothesis 08-13-2010 08:30 AM

My son has the simlar birthmark on his left eyelid and I am confused too.
Can someone tell me: is it stork bite (Salmon Patch or PWS?

missy 08-13-2010 12:05 PM

hypothesis,

if you could post a photo, we might be able to tell you that. but your son should probably be seen by a specialist for a good diagnosis.

You might try sending a photo to Dr. Nelson at http://birthmark.org/experts.php and he might be able to tell.

Missy

kaykay 08-13-2010 01:56 PM

yes consult the expert ! its so faint. wow. an dark in the light ? huh.

i have a small pws corner of my left eye. left eye is slightly weaker but no problems. need polarize sunglasses thats all.

hypothesis 08-13-2010 05:49 PM

Quote:

Originally Posted by missy (Post 20236)
hypothesis,

if you could post a photo, we might be able to tell you that. but your son should probably be seen by a specialist for a good diagnosis.

You might try sending a photo to Dr. Nelson at http://birthmark.org/experts.php and he might be able to tell.

Missy

Thank you so much Missy. I don't have a good photo right now and will try to take one and send to Dr. Nelson later. But what do you think the one XROX posted. My son has the same mark and on the same spot only smaller. Sometimes it looks faint and sometimes it's red.

Two doctors in the hospital where my baby was delivered said it's just a stork bite that will go away in 1 or 2 years. Our pediatrician said the same thing. He didn't even want to refer us to the dermotologist. We are in Canada and cannot see the specialist without a reference from our family doctor. And even if he would refer us, it will take almost half a year to get to see the specialist. That's why I was upset.

Anyways, if you could let me know what do you think of XROX's photo, that would be very helpful for me.

Thanks.

hypothesis 08-13-2010 06:03 PM

Quote:

Originally Posted by kaykay (Post 20238)
yes consult the expert ! its so faint. wow. an dark in the light ? huh.

i have a small pws corner of my left eye. left eye is slightly weaker but no problems. need polarize sunglasses thats all.

Thnaks Kaykay. If it's ok, can you tell me if yours PSW is on the eyelid or on the face? and is this small one the only PSW you have? My baby is just one month old and i don't know much about the birthmark. I hope you can understand my question. Thanks.

hypothesis 08-13-2010 09:22 PM

Hello Kaykay,

I saw your old picture. You were such a cutie!


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