Lower Lip Hemangioma - Vascular Birthmarks Foundation Forum
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  #1  
Old 06-17-2010, 07:33 PM
ahonerlaw22 ahonerlaw22 is offline
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Default Lower Lip Hemangioma

Hi All,

I'm new here, been a lurker for awhile. My 7 1/2 month old daugther has a hemangioma on her lower lip. Luckily, it has not ulcerated or grown. We've seen a specialist at Childrens and they recommend the old "wait and see" approach. They said that Propranolol, Timolol, laser or steroid injection would not really work for her since her H has stabilized. They said surgical excision is the only real option and they don't want to do that because of scarring. So, basically, we've been told to "get through it" and "wait it out, it will eventually go away".

I guess I'm just frustrated. I know that her H isn't that bad but it is still on her mouth and very visible. Not a day goes by that someone doesn't ask what happened to her lip. Soo annoying.

I guess I just wanted to vent a bit. I've attached a pic of her H.

I have noticed though that it isn't as red and the borders seem "softer". Does that indicate involution may be starting?
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File Type: jpg lower lip hemangioma.jpg (70.4 KB, 0 views)
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  #2  
Old 06-17-2010, 09:20 PM
tlampley3 tlampley3 is offline
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she is beautiful! i know it gets annoying having people always ask questions about it. my daughter has a very large segmental hemangioma on the side of her head and under her chin, as well as 2 smaller ones on her lower lip. people always look at me like i "did" something to her. i understand they are just curious and uneducated, but it is definitely annoying! hang in there!
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Tiffany
~Momma to Logan, 3 and Livy, 1~
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  #3  
Old 06-17-2010, 10:39 PM
missy missy is offline
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Both of you are just gorgeous! I'm sorry you're frustrated... a good number of hemangiomas really don't need treatment. I hope that your daughter's is indeed involuting and that it happens fast.

Missy
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  #4  
Old 06-18-2010, 12:37 AM
smurph smurph is offline
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HI there. I know how annoying the comments can be. My daughter has an upper lip hemangioma too. She is 5 now. We got lots and lots of comments when she was a baby and young toddler, but I really have to say the last few years have not been bad at all (partly because it has involuted so much)...hardly anyone says anything. I don't think one child ever asked about it in preschool, which she was in from ages 3-5. So there is hope!!! When I look back now, I think how I was lucky that all the comments were made before she even knew at all or cared. It was just a pain for me because I was so sensitive about it.

So sometimes, I would explain to people about hemangiomas and other times I would just say, "It's a birthmark" and be on my way. By the way, two of my daughters have had pretty significant hemangiomas. One daugther required treatment, the other one, the wait and see approach....both based on the same doctor's advice....so we have been there in terms of the wait and see.

Hopefully you will start to see some change in a few months. As soon as my daughters' hemangiomas started to involute I found my anxiety decreased significantly. I really could start to believe, "Oh, it really DOES go away" It seems so impossible at first.

So hang in there. You will get there.
Shannon
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  #5  
Old 06-18-2010, 03:57 AM
mperron mperron is offline
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When your child has an h, you just want to protect them from this superficial world. It's only natural, were parents!
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  #6  
Old 06-18-2010, 12:51 PM
ahonerlaw22 ahonerlaw22 is offline
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Thanks to everyone for responding. I do feel like a Mamma Bear protecting her from the mean world. I just don't want her to have to go through teasing. I have a port wine stain on my leg and have always disliked wearing shorts/bathing suits my entire life becuase people stare and ask.

Luckily, she's still too little to know and I'm hoping that it will be mostly gone by the time she is school age!!
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  #7  
Old 07-02-2010, 05:25 PM
lietuva75 lietuva75 is offline
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Hi,
my daughter has hemangioma in almost same spot as yours. It even looked about the size. Our doctor told us if we did not address it and leave it alone, it would leave tissue that would require surgical removal and possible leave scarring. She has been on Propranolol since 5 months (she is 11 months now) and has had 3 laser treatments. So far we are happy with results. Good luck.

Walt
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  #8  
Old 07-03-2010, 12:30 AM
momofella momofella is offline
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Hi,

I just joined and wanted to share that my daughter has a lower lip hemangioma. In fact, her entire bottom lip has a hemangioma. She's almost 4 and just had surgery to remove part of the tumor so her lip is more normal sized. When she was 3 months old about 90% of her lip ulcerated. Only one small spot in the middle didn't. Thank goodness, that was the only way to get the bottle in her mouth to eat. She actually has several hemangiomas on her face, one by her ear, one on her cheek, several on her chin, and then her lip. She was on prednisone orally, then it was injected directly into her lip, pulsed dye laser treatment, and now the surgery. For us, surgery was a no brainer basically because she already has scaring from the ulcerations when she was a baby. That's great that your daughters hemangioma hasn't ulcerated. I wish my Ella's didn't.

I totally feel you with the comments people make. Everyday that I go out with her, someone says, "Awww, look at her. Did you eat blueberries?" or something of the sort. How her hemangiomas can look like food to some people will always make me wonder...Kids are actually much better about it. They'll just flat out ask me what is on her face and I explain it to them. When kids ask my daughter she replies with "they're my marks" and leaves it at that.
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  #9  
Old 07-05-2010, 12:51 PM
ahonerlaw22 ahonerlaw22 is offline
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Walt,

Where are you located? All of the docs in Cincinnati have said to leave it alone. Dr. Levitin and Waner suggested surgery. I have an appt this week with a pediatric dermatologist in N. kentucky and am hoping for some kind of treatment (Laser, Timolol or something). I think I will give it until she is 1 to decide on surgery. I'm wondering why the clinic here in Cincy doesn't really treat? My cousin's little girl is two months old with a large H on her scalp and they won't treat her either. It has ulcerated and is growing rapidly. this is very frustrating. I think doctors are still scared to really treat.

do you have any pics of your daughter?
Thanks!
Anne
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  #10  
Old 03-31-2011, 03:57 PM
lisaholt35 lisaholt35 is offline
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Hi, I am new to this website, my 5 week old baby girl has a strawberry birthmark in pretty much the same place as your daughters and I am really worried. I have been to my gp and he said that it will go away on its own, but as its on her mouth, I dont really want to wait until it gets bigger and becomes a problem. How is your daughter now? has it gone down?

Regards

Lisa
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