How to get a proper diagnosis? - Vascular Birthmarks Foundation Forum
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  #1  
Old 12-30-2007, 02:00 AM
jplissa jplissa is offline
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Default How to get a proper diagnosis?

Our infant daughter has a large vascular lesion on the outer surface of her left arm, with what appears to be an additional patch on her upper chest. The hospital pediatrician characterized it as either a port-wine stain or an hermagioma (though based on the information we've found on line we think it is most likely a port-wine stain.)

I am therefore looking for advice on finding - and getting in to see! - the right Drs to diagnose her lesion, assess for any additional problems (like KTS), and provide any appropriate treatment. We have a pediatrician we like, but obviously want to take our daughter to a specialist in pediatric vascular problems. We live in the Washington, DC area and would prefer to find a Dr in the general area, but can travel if necessary (we have family in the NYC area.)

Thank you for any feedback!

Best,
Melissa
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Old 12-30-2007, 12:09 PM
missy missy is offline
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Well, there is Dr Waner in NYC. He is regarded as THE expert, bar none.

Around your area, though, are some very good physicians:

Bernard Cohen, MD
Pediatric Dermatology
The Johns Hopkins Hospital
Brady 208
600 N. Wolfe Street
Baltimore, MD 21287
410-955-2049 (tel)
bcohen2@jhmi.edu
Treats vascular lesions
Anne Comi, MD
Kennedy Krieger Institute
707 N. Broadway
Tower 100B
Baltimore, MD 21205
Phone: (443) 923-9127
Fax: (443) 923-9160
Email: comi@kennedykrieger.org
The Hunter Nelson Sturge-Weber Center at Kennedy Krieger Institute
http://sturgeweber.kennedykrieger.org/index.jsp

Either of those can give you a proper diagnosis!

Missy
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  #3  
Old 12-30-2007, 09:25 PM
jplissa jplissa is offline
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Hi Missy -

Thanks for the Dr advice. I have a phone call in to Dr. Cohen, and hopefully we can make an apt without a referral - otherwise I guess we will ask for a referral at our next well baby visit.

And I don't know if this is the right place, but I really want to say thank you to you and the runners of this site for providing this community - we have found it an invaluable source of information as we try to figure out the best care for our daughter.

Best,
Melissa
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  #4  
Old 12-30-2007, 10:29 PM
missy missy is offline
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Well, you're welcome! Linda Shannon puts a ton of time and effort into this site... it is her life and she has done a great job by putting so much information in one place.

Keep us posted on your progress. Dr. Cohen is a great start! Fabulous doctor and, I've heard, a very nice man.

Missy
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