Help with lower lip hemangioma- new here

emilymathews2004 · #1 12-30-2011, 06:11 PM

Hello! I'm so glad I found this forum- I have found so much information that has been very helpful already. My daughter started developing a lower lip hemangioma when she was 2 weeks old. For the first 4 weeks it grew a little but stayed flat and was only visible when her mouth was open. Now it has grown quite a bit and is raised and about the size of a cranberry. It is staying within the lip margin so far. Today we noticed what we think is the beginning of ulceration. Can you all who are familiar with the beginning signs of lip ulceration look at these pictures and confirm this for me? I called our pediatrician and he said not to do anything unless it starts bleeding, which from what I read isn't true. I gather you need to be really proactive with this or it can get bad fast, right? Is there anything I can do to prevent further ulceration? We are going to see a pediatric plastic surgeon on Jan 5th and a pediatric derm specializing in infantile h's on Jan 19th (we are in Atlanta), but I think I will just remain very anxious until then. These lip h's can be so scary! My husband had one in the same location, but it stayed small and went away completely by the time he was 2-3. You would never know anything had been there. We were hoping our daughter's would do the same, but it doesn't appear that will be the case. Any input is appreciated!!!

emilymathews2004 · #2 12-30-2011, 06:12 PM

Sorry- those are huge! Should I resize them or is it better if they are big?

emilymathews2004 · #3 12-30-2011, 06:13 PM

I also forgot to add that she is 9 weeks old now.

missy · #4 12-31-2011, 12:03 AM

Hi and welcome!

She is beautiful!!! And ... the bigger the better!

Write to Dr Serena via http://birthmark.org/experts.php Send him a photo. He will give you good, solid advice on what to do.

Beautiful girl!! You're a lucky mom!

Missy

juliekelly317 · #5 12-31-2011, 03:43 PM

Hey There,
We are in Nashville and my daughter is 5 months with a similiar H on her upper lip. What doctors in Atlanta were you able to find? Despite Vanderbilt Children's being right here, we have not been successful in finding doctors that specialize in Hemangioma's here in Nashville. Thanks!

smurph · #6 12-31-2011, 06:45 PM

I just wrote a reply and then I erased it accidently! Well, I'm not sure I can remember it all, but the basic idea was that my daughter has a lip hemangioma on her upper lip that ulcerated at about the same age as your daughter's. We also told our pediatrician of our concern and he brushed it off and said just put vaseline on it and it will be fine. I was so upset when we went to Boston a few weeks later and found out she had a raging ulceration and was in a lot of pain. It really burns me up when pediatricians say these things because of all the new, good information out there, but maybe I'm just oversensitive about it??

If I were you, I would call the doctors you have upcoming appts. with on Monday or Tuesday and just mention your concern about a possible ulceration. And then you could ask if they would like you to keep your original appt. or come in sooner. At least they will be aware and see you sooner if needed, especially if she develops pain. In the meantime, I will tell you what we had to do and maybe it's something you could do too, or ask about. We had to put Aquaphor on my daughter's lip a few times a day to keep in moist, especially before every feeding to cut down on the friction on the hemangioma.

Good luck with everything. Early intervention was a great thing for us and really helped to prevent more serious steps later. My daughter is 6 now and her lip looks great. I think it's really important to be proactive with lip hemanigiomas.

Keep us posted!! Glad you found this forum!

shannon

emilymathews2004 · #7 12-31-2011, 08:43 PM

We are going to see Dr. Joe Williams on Thursday and Dr. Leslie Lawley, a pediatric derm, on the 19th. I am going to call Dr. Lawley on Monday and see if she can get us in earlier because I think she will be the one who will start the propranolol. Dr. Levitin was kind enough to email me back, which is just so wonderful, and he recommended that and laser treatments. If these doctors we see here do not recommend the same, then I think we will go up to Greenville to see Dr. Levitin himself.

I have been putting Aquaphor on her lip all day. It is worse today and she is obviously in pain.

The Aquaphor helps, but I did have to use Orajel before she would nurse.

smurph · #8 01-01-2012, 05:09 AM

I wasn't sure from your previous post if she was in pain. If she is I would definitely let the doctors know and hopefully they will bump up the appointment...or like you said, go to Dr. Levitin.

My daughter's specialist gave us a tube of Xylocane so we could rub some on her lip before every feeding. It helped tremendously! I would ask for that, for sure. We had to do Aquaphor and Xylocane (until the ulceration healed completely). We continued with the Aquaphor for at least a year and even beyond.

Good luck with everything!

Shannon

missy · #9 01-01-2012, 11:49 AM

Let us know what happens tomorrow ... if they can change your appointments or not. I hope they do!

I'm sorry she's not feeling well. That's a bummer anytime, but it seems worse when the weather's cold.

Poor pumpkin!

Missy

emilymathews2004 · #10 01-01-2012, 01:15 PM

It is just awful to watch. It was much worse yesterday, and she was crying in obvious pain. I got some Orajel to put on it, but that seems to hurt her, too. I will definitely ask for the xylocaine- thanks!

It does seem a bit better today. I've been putting Aquaphor on it like crazy. Poor think also has a stuffy nose, so she has the double-whammy of uncomfortable things. She's such a sweet and happy baby though- she doesn't let it get her down for long.