Hemangioma or PWS - Vascular Birthmarks Foundation Forum
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  #1  
Old 08-06-2013, 09:28 PM
ktlynn54 ktlynn54 is offline
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Default Hemangioma or PWS

Hi,

My son is two weeks old and was born with either a port wine stain or a hemangioma on his lower lip and just below the lip. It does not appear to extend onto the inner mouth lip area. Our pediatrician at the hospital described it as a PWS and our normal pediatrician felt it was a hemangioma. Both of them told me that they were unsure at this point and we just need to watch it.

I know that it is early on, but I really think we should at least have it diagnosed so that we can know what we are dealing with. Also from reading these forums it appears that getting appt's can take time and a hemangioma can grow an ulcerate quickly (especially in the lip area). I would appreciate any input as to what it may be. As well as input as to how hard I push to get an appt with a specialist sooner than later? Is a regular dermatologist ok just to get a diagnoses or should we go right to a pediatric dermatologist? Any input would be appreciated. I live in the central VA area but am willing to travel if necessary.

I've attached a couple of photos of his lip.

Thank you,

Katie
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  #2  
Old 08-07-2013, 01:20 AM
missy missy is offline
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Hi and welcome!

Congratulations on your new baby! Yay! I love the babies.

I'm with both of them...I can't tell what that is.

My suggestion would be to look in the Baltimore area and find a specialist in birthmarks, not necessarily a dermatologist. I know we have lots of listings in your region, but find a doctor who deals with all kinds of birthmarks.

You can also write in to one of our experts at http://birthmark.org/experts.php.
I suggest asking Dr. Levitin and Dr. Nelson.

Let us know what happens!

Missy

Last edited by missy : 08-07-2013 at 01:21 AM. Reason: stupid auto correct
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Old 08-08-2013, 07:57 PM
smurph smurph is offline
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Hi! I would definitely see if you could get in with a vascular anomalies doctor or pediatric dermatologist, someone who sees these things all the time. You could tell your pediatrician that since it is on his lip you would like to make sure it is correctly diagnosed and monitored in case any issues come up (since lips can be prone to ulceration, etc.) I would also suggest taking photos of it on a regular basis to document any growth or changes. I found that to be very helpful and I know that doctors we have shown found it helpful too. Keep us posted! Your son is adorable!!!!

shannon
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Old 08-13-2013, 06:58 PM
ktlynn54 ktlynn54 is offline
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Thanks so much for you help Missy and Shannon. I've contacted the The Center for Hemangiomas and Vascular Birthmarks at the Childrens Hospital of the King's Daughters in Norfolk, VA. They've looked at pictures and have made an appointment for the this Friday. The support I've found here, really helped me to go ahead and push to get things moving. Thank you.
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Old 08-14-2013, 06:55 PM
smurph smurph is offline
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Awesome news!!!! Let us know how it goes!!
Shannon
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