Please...need advice please for son's lip hemangioma - Vascular Birthmarks Foundation Forum
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  #1  
Old 06-30-2012, 03:38 AM
Camsmommy Camsmommy is offline
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Question Please...need advice please for son's lip hemangioma

Good evening!
My son, Cameron, is 5 weeks old. He was born without a noticeable lesion on his lip, but within a few days we saw what we thought was an irritation under his left nostril. Within a week or so, it had spread down to his lip. We thought maybe it was part of his newborn acne....but when the acne went away the rednes from his nostril to his lip remained. So, we knew it was probably a birthmark.
When we went to his doc she told us it was a hemangioma, that it would go away on it's own, and we should just keep an eye on it to watch it's growth.
I'm not sure I'm happy with that...I'm concerned because it affects his lip and from what I've been researching those can become very complicated with ulcerations, disfigurement, trouble eating, etc. His appears superficial on the surface...but it is also on the underside of his lip in the red flesshy part, up to the gumline. But not on the palate, inner cheek, etc. Just the lip. That's the area I'm concerned with since it is constantly irritated by the bottle nipple.
Anyway, I'm attaching pics of what it looks like now....at 5 weeks. Again, it was not there at birth and became visible within a week or so. It is redder now than it was.

So, I'm wondering....I live in Newark, DE. What are suggestions for us as far as where we can take him for aggressive treatment? I don't want to wait for it to enlarge and possibly ulcerate. I know that always leaves a scar.
I've been seeing positive results from Propanolol? And what about the topical gel Timilol? I would love to go that route since there seems to be positive results with little invasiveness. Any suggestions for us?

Thanks so much....We really want to have him evaluated/treated ASAP.
BTW= This forum is awesome!!! What peace of mind it provides!!
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  #2  
Old 06-30-2012, 03:41 AM
Camsmommy Camsmommy is offline
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for some reason the site is not allowing me to upload the pictures. So frustrating. I will continue to try...
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Old 07-01-2012, 01:38 AM
missy missy is offline
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Hi and welcome!

If you will send photos to contact@birthmark.org I will ups them for you.

Missy
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Old 07-01-2012, 02:40 AM
smurph smurph is offline
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Hi there! I haven't seen your pictures but your story sounds almost identical my daughter's hemangioma on her lip. Our ped. said the same thing and although it is possible for hemangiomas to go away on their own, it is often necessary to watch lip hemangiomas more closely and possibly treat them due to some of the complications you mentioned. So I think it's great that you found this site and are investigating your options now. I know that there are some great doctors in NY...Dr. Levitin is one of them, but I bet there are also docs who are closer to you. Maybe someone will chime in on here with a suggestion.

Here's my daughter's photo album with her lip hemangioma if you are interested in seeing it.

http://www.facebook.com/media/set/?s...0902383&type=3

Every hemangioma is different and so it doesn't mean your son's will look the same, but I think you might be pleased to see the final outcome and know that it is all going to be ok. You are at the hardest part I think because it's tough to figure out what is going on and what the best steps are to take. I was always afraid to make the wrong decision. But a doctor told me once that there is no wrong decision....my daughter was going to be fine no matter what I chose and that really took the pressure off! With that being said, I'm glad that we intervened early because I feel like we prevented more invasive work down the road. We did not have propanolol available at the time because my daughter is 7, but it seems like a very good option.

As for the bottle problem, we had the same issue with bottles and nursing. She actually did get an ulceration from it. We ended up putting a layer of aquaphor on the nipple and on her lip to help prevent friction. That seemed to help the healing process and prevention of further ulcerations. Just a suggestion. Good luck with everything. If you want to chat more, feel free to send me a message here or I can give you my email address. It sounds like we might have a lot in common!

Shannon
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Old 07-01-2012, 08:30 PM
Camsmommy Camsmommy is offline
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Thanks so much for the responses! Missy, I did send my pics to that email address, if they did not go through please let me know.
Shannon! Thanks soooo much for your input. It was so good to leaf through the pics and see the ultimate outcome. I'm hoping to even prevent any ulceration, like you said, by intervening early. I really hope that someone can suggest a doc in the Baltimore or Philly area for us. I think I will send a message to Dr. Levitin once my pics are available for him to view. I found a couple of Pediatric derm's at AI Dupont hospital....but I hesitate to go to anyone who doesn't have specific experience dealing with these lesions. I already have had him at our Pediatrician and an adult dermatologist with the same "wait and see" philosophy. Like you said, I think this is the hard part...nailing down the appropriate clinician and treatment.
Again, thank you and I have a FB page too! I requested you as a friend....

I will keep you posted, and hopefully my pics will be up soon so that you can check them out and let me know what you think!
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  #6  
Old 07-02-2012, 12:59 PM
missy missy is offline
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Oh, he's a cutie-patootie!
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  #7  
Old 07-02-2012, 01:03 PM
missy missy is offline
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There are lots of options in your area at
http://birthmark.org/node/47 especially at CHOP, if that's an option.

Other parents will come by soon and give you more detailed recommendations for doctors in your area.

Missy
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Old 07-03-2012, 03:48 AM
Camsmommy Camsmommy is offline
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Thanks Missy! We think he's pretty cute, too.
I contacted Dr. Low at CHOP today, but he wasn't available until the end of August, but they were able to get me in to see another MD there...Dr. Lin. We have an appointment this coming Wednesday, and I'm so anxious to see what she says! I will keep you updated.
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Old 09-30-2012, 05:11 PM
Amyklarmom Amyklarmom is offline
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Hi! I wanted to follow up on this thread..
was curious what route you ended up taking?
My daughter has a very similar looking H (born 8/1).
We started timolol at about 3 weeks, and have an appt tomorrow to start propranolol.
Wondering if you have any insight.
THanks,
Amy
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