PWS on Genitalia? - Vascular Birthmarks Foundation Forum
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  #1  
Old 09-19-2011, 06:08 PM
EricaJones EricaJones is offline
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Default PWS on Genitalia?

My daughter is 16 weeks old and has a red birthmark on her vulva and inner thigh. She also has a few "islands"of color on her inner upper thigh and by her hip bone. She has had this since birth and it can fluctuate in color from a light red to dark red. My son died shortly after birth in 2010 due to fetal hydrops and pulmonary hypoplasia, so I am very concerned with my daughter's health. So, I have done research online and think that this may be a port wine stain or nevus flammeus. I recently took my daughter to her pediatrician because I am concerned with her birthmark. The pediatrician told me that she doesn't think it is a port wine stain because of its location (she only has seen them on the head) and color (she stated that port wine stains are darker in color). She referred me to a dermatologist to get it checked if I still had concerns. Obviously, it takes a long time to get in to see a pediatric dermatologist, so I am desperate for some kind of information now. My questions are: Does this sound like a port wine stain; If not, what could it be and if it should be of any concern?; and, If it is a port wine stain, is there any concern due to its location on her body? (I have read that PWS can indicate other underlying issues. I have researched PWS and cannot find any information regarding PWS on the genitals.). She also has a salmon patch on the nape of her neck and an "angel's kiss" on her forehead (this has lightened dramatically and only is visible when she is upset or crying). Do these have any correlation to the genital birthmark? Thank you for reading.
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  #2  
Old 09-20-2011, 02:21 AM
missy missy is offline
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Hi and welcome!

Please write to dr nelson via http://birthmark.org/experts.php. You can send a photo of her inner thigh if you can get one.

Missy
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Old 09-20-2011, 10:13 AM
EricaJones EricaJones is offline
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Thank you for your quick response. I sent Dr. Nelson a message. I can't get a picture of the inner thigh part only, because it is mainly in the crease of the thigh between the right labia and upper inner thigh.
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Old 09-20-2011, 11:10 AM
missy missy is offline
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I thought it might be difficult to get a photo, but if you can get one, he can probably give a better opinion. But that would probably creep me out to do that to one of my kids, so I can understand if you don't.

I remember once a guy sent in a VERY close up of the PWS on his scrotum. VERY close up.

Let us know how things are going. Any idea when you'll get to see the pediatric derm?

Missy
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Old 09-20-2011, 06:14 PM
EricaJones EricaJones is offline
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Too funny! Anyways, I am not sure when I will get in to see the doctor. I sent all my information to our Children's Hospital (12 page application and photos!) Hemangioma and Vascular Malformation Center. All the doctor's get together to review all current and new cases Wednesday's between 8am and 10am. They are going to review my daughter's case tomorrow morning. They will decide then how soon they would like to see her. Keep your fingers crossed for us!

Dr. Nelson responded to my question. I did not send him the photos, but am willing so I can get his professional opinion. He told me that the genitals are an unusual place for PWS and to get in to see a pediatric dermatologist. He also said it sounds like a hemangioma. Everything I have read and seen has made me think PWS. I always thought hemangiomas weren't flat like this is. It probably would help if he saw the photos. I sent him an e-mail asking if he wanted to see them. I will keep you posted. Thank you so much!
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Old 09-20-2011, 11:40 PM
missy missy is offline
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Hemangiomas can start off flat.

I'll be waiting in the morning to find out what happens after tomorrow's review! Keep us posted!

Missy

PS... Dr. Nelson is awesome, is he not?
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Old 09-21-2011, 09:59 AM
EricaJones EricaJones is offline
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Dr. Nelson is wonderful! He contacted me so promptly!

I definitely will keep you informed when I hear from Children's. I really hope it will be today. I am not sure how quickly I will get the response. I don't think I will hear today (I really hope I do though!), I work at a hospital and I know how slow these things can go.
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Old 09-22-2011, 10:30 AM
EricaJones EricaJones is offline
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Just wanted to keep you up to date. Children's Hospital called me yesterday afternoon. They asked if I could bring in my daughter on the 18th of October. The woman didn't say what the doctor's thought it is (I surely asked her though). She did say I would be meeting with the specialist and a surgeon. I am really not sure what to think anymore. It will be a long 26 days until the appointment.
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  #9  
Old 09-22-2011, 10:55 AM
missy missy is offline
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wow.

Really, though.... the woman who called doesn't know what the doctors think, or if she does, it's not her job to tell you. 26 days is a long time for you to wait, not because of the birthmark, but because of the stress.

Hang in there and come talk to us in the meantime!

Missy
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  #10  
Old 10-19-2011, 10:26 AM
EricaJones EricaJones is offline
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I thought I would follow-up after my daughter's appointment (since I hate when I look for answers online, only to find someone else with my issue that has no resolution. But anyways, LOL!). My daughters appointment was yesterday. We saw a team of ten various specialists. They confirmed my suspicion that it is a port wine stain or capillary malformation on the labia. The doctor's told me that they thought that it would have been a hemangioma, judging from the location. They told me it is very rare to have one located in the genital area, and that it is more common for the legs, arms, or face. They do not recommend any laser treatment in that area. They said that laser treatments are not very effective on the trunk area of the body. Also, they said it was reasonably light in color comparatively and that it would only be done for cosmetic reasons. They said they do not foresee any problems in the future for the birthmark, but they do recommend that she have an ultrasound performed to ensure that there is no problems with any organs (bladder, kidneys, urogenital region) beneath the malformation. They told us that it would be very rare, but this is not a text book PWS. I am scheduling the ultrasound today and will update everyone as to the results. I am feeling pretty confident that it show no problems, since I had in depth ultrasounds of all of her organs multiple times in the womb due to my son's death. All of those showed no issues and I had my last Level 2 one week before her birth. I am going to keep my fingers crossed that her birthmark will only be a cosmetic issue in the future. Thanks for listening!
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