Upper lip hemangioma.. Help? - Vascular Birthmarks Foundation Forum
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Old 03-25-2013, 11:50 PM
cmalicki cmalicki is offline
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Default Upper lip hemangioma.. Help?

New to this board! But I am in need of help from people who know what I'm dealing with. So my daughter was born with the tiniest pink line on her lip, looked like nothing... 2 weeks old. It turns red and starts to grow. Now at 5 months old she has little smaller than a pea sized strawberry hemangioma on her upper lip goes across her lip line onto the skin. It's RED and puffy! She's still cute as a button and everyone thinks she's absolutely beautiful which I agree BUT of course I still want it gone lol or at least flatter and lighter in color! If it gets any bigger or puffier it'll block her nose while eating. It hasn't been growing or at least it must have slowed its growth for about a month or so. Went to a pediatrician and he prescribed her triamcinolone acetonide 0.1% cream. He wanted us to apply a coat and cover it 24/7 and apply new coat twice a day. Um ya she loves her fingers, it's impossible to keep it covered on a wet lip and fingers on the mouth lol so we apply it while she sleeps and he said it was fine and that we should see a size difference in 2 weeks. Well it'll be 2 weeks on Friday and I see no signs of change... He mentioned propranolol if we see no change. I mentioned timolol but he said that timolol needs to be covered after its applied. I hate that it's on the lip cuz I have to be so careful nothing gets in her mouth!!

So anyway I'm sitting here contemplating the propranolol discussion I know we'll have... I'm so hesitant about it. He never mentioned having her admitted to hospital when we start it if we start it. Has anyone had any problems with it with a 4-5 month old? Does it actually help? And how long were they on it for? Again it's a strawberry one that is superficial it seems and it is small. I just want the color to lighten and it to be flat... Disappearing would be an added bonus lol

Sorry that was so long! I just want some help

Thanks in advance!
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Old 03-26-2013, 03:19 AM
smurph smurph is offline
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Hi there! My daughter has a lip hemangioma as well. Since she is 8 years old, the treatments were different back then, so I don't have any experience with propanolol. With that being said, personally, I would see a vascular anomaly specialist or pediatric dermatologist first before entertaining the idea of propanolol. Just because they deal with these things all the time and may be able to give you a different perspective from a pediatrician. It sounds promising that it hasn't been growing rapidly lately so that might be something they would consider. Also, they will have experience with lip hemangiomas which can be tricky at times. My daughter did have treatment (oral steroids) because her lip ulcerated. It was worthwhile to us for that reason and it helped to slow the growth and preserve her lip line which was important to us. My other daughter had a really big hemangioma on her hand and wrist and our specialist encouraged us to wait it out and much to my surprise it totally went away on its own. I wouldn't have believed it if I hadn't seen it myself! The best medicine for her (for me! haha! ) was patience. By the time she was 1 it was barely noticeable. So like I said, going to a specialist might be helpful to you in exploring your options. I will attach my 2 daughters' photo albums just as a point of reference for you; so you can see how my daughter's lip progressed with treatment and then also how my other daughter's involuted without treatment.

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

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

Best of luck! Hope this helps! Hopefully others will chime in about propanolol.
Shannon
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Old 03-26-2013, 06:21 AM
cmalicki cmalicki is offline
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Thanks for your response!! The thing is, I'm in Canada so we need to be referred to a specialist like that and currently we are on a waiting list of about a year to see one! So that's why I asked to see a pediatrician. He had actually went to a hemangioma conference after seeing my daughter so that's why he was saying the treatments these days are propranolol and timolol. Even though he's seen great results from steroid creams.. I still need to check out your pictures but was the oral steroid okay? Did it have side effects?
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Old 03-26-2013, 06:22 AM
cmalicki cmalicki is offline
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@smurph
Your links didn't work for me kept saying the content is currently unavailable
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Old 03-26-2013, 08:05 PM
smurph smurph is offline
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I will look into those links. I have my settings set to public for those albums. Are you on Facebook? You can friend me if you like and maybe that will help. They usually work for people on here so I'm not sure what happened. That is great that you have a pediatrician that is so interested/knowledgeable about the subject. My kids are getting crazy right now! I'll write back more later!
Shannon Hohenadel
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Old 03-27-2013, 05:47 AM
cmalicki cmalicki is offline
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Oh I figured out why, I wasnt logged in apparently lol I see them now! That's amazing the one that went away on its own! The lip one, wow you can't even tell at the end. I can't post photos of Addison's from my phone but if you want to see what hers looks like just email me crystal.malicki@gmail.com and I can send you some. We see the pediatrician tomorrow morning so we'll see what he says... Question about laser treatment.. So it does make it sore? Because I don't want to affect Addison's eating.
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Old 03-27-2013, 03:26 PM
jennr11 jennr11 is offline
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We started propranolol last May when my daughter was 10 weeks old. I could not have been more terrified, the possible side effects you read about are scary! She has a large H on her forearm/wrist/thumb area. She is still currently on it and will be coming off it this month, so we've been on it about 10 months. We have had ZERO complications from it. Before she started it we saw a pediatric cardiologist. He did an EKG, ECHO, and checked her blood pressure. After all tests were normal we were sent home with the prescription that day. She takes the med 3 times a day about 10 mins before she eats to avoid spitting it up. We have been very pleased with the medicine and for us it made all the difference. Her H had already started ulcerating and causing her lots of pain. The first two doses she had made the H turn a really deep purple color for a few hours. It was the craziest thing and luckily I had read about it before it happened. The growth of her H literally stopped the day she started the med. and we could tell a difference in the size and texture within a month. It has dramatically shrunk and lightened her hemangioma. Her hemangioma is compound so there is still some excess tissue present and pigmentation, but we are hopefully starting laser treatment soon to knock it out. Hope that helps!
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Old 03-27-2013, 07:18 PM
cmalicki cmalicki is offline
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Oh that would freak me out if it turned purple lol! Thanks though it does help. It's just that hers is so small I don't know if itd be worth it. We saw the pediatrician today and he said he can see that the hemangioma is slightly less bulky. I don't notice it because the change is slight and I see her everyday lol but it's good to know he does see a difference with the steroid cream so were gonna keep going with the cream for another 3 weeks and see where it's at then!
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Old 03-28-2013, 01:02 AM
smurph smurph is offline
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Hi!
I will definitely email you! The laser actually didn't hurt her much after the fact. The first time she had anesthesia and the second time was numbing cream. I was in the room with her and she did really well-it still hurt a little bit but it couldn't have hurt too much based on how she was acting. Afterwards, I think I gave tylenol once or twice but that was it. It looked worse than it felt I think.
One thing I would suggest is to take pictures of it like maybe once a week until you go back...that might help you to document any changes and you will be able to see it more objectively, because like you said, when you see your child every day it is hard to notice the difference, especially when it's subtle. You can also bring those pictures to the doctors appts. I found that to be very helpful. The fact that she is 5 months old and it doesn't seem to be growing rapidly is probably a very good sign.
I'm glad your appointment went well. It's hard as a parent to wait it out to see how it goes, but time is on your side! Keep us posted on how it goes.

Shannon
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Old 03-28-2013, 03:09 AM
cmalicki cmalicki is offline
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That's exactly what he suggested to was to take a picture every day for 3 weeks so that I can see the change. I asked him about laser but he said he didn't know enough about it to suggest it so that's fair! And I will keep u updated
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