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svsuengel 08-16-2012 09:47 PM

Lower lip hemangioma
Hello, I lurked a while ago when my daughter Madeline was first diagnosed, but never posted anything. Now that our life has calmed down a bit, I want to share some pictures so that any others searching can see before and after propanolol pictures.

We were originally told by our pediatrician that it was no big deal and she would outgrow it; by 5 weeks he offered the referral. My first appointment with the dermatologist was scheduled for 6 weeks away and I called back repeatedly to have the appointment moved closer as cancellations happened.Unfortunately, her lip ulcerated just a week before the 4x rescheduled appointment. My husband called me at work when she was 8 weeks old and said he couldn't get her to take a bottle and she had been crying for 2 hours. I left early and nursed her.. nothing seemed wrong. It took a few days for the ulceration to spread from where it was down inside her lip to where we could see it.

This is where I get angry at myself...I took her in to the pediatrician that day, he says she hasn't lost any weight and is still nursing, just keep the appointment next week with the derm. I asked for pain medicine, he says it's not necessary.Oh so much crying and screaming that weekend; she ate but she did not enjoy it, took in a lot of air and had painful gas to scream about also. I wish I had pushed harder. We got an early morning cancellation appointment with the derm on Tuesday, he says have the ped. refer you to the vascular guy, this is not a case for me. We see a different, excellent ped, right after derm. She pushes the referral through for me and sets up an appointment Thursday with both a dr and a speech pathologist who works with cleft pallet feeding issues.

We were admitted for a 3 days stay at Mott's Children's hospital Friday afternoon to start the propanolol. After 2 doses my husband and I thought we were crazy wishful thinkers, but the nurses saw a difference too. Already her birthmark was lighter and not as full! Maddie has been on 1ml 3 times a day for almost 4 weeks now and so far the only side effect has been cold, clammy feet. Her hemangioma shrank rapidly the first week, but it has been holding steady at half the biggest size since then. The ulceration looked like a volcano top before propanolol, and as her lip swelling went down it turned into a crack. I had to use Magic Mouthwash to feed her until last week, but the ulceration is almost healed and she no longer needs it.

I have tried creating a public album on FB, but it will not let me create a new one to make public, keeps trying to open files. I will probably have to e-mail them in. Sorry!
Picture #1 3 weeks, getting ready for a wedding
Picture #2 9 weeks, the day before we started propanolol
Picture #3 12 weeks, last week my happy baby is back

edit: hrm, I tried to indent and break it up, but apparently my post wants to be a wall o text...sorry again.

missy 08-17-2012 03:50 AM

3 Attachment(s)

Here you go!

smurph 08-20-2012 04:38 AM

Oh my goodness...your story breaks my heart because I have been there!!!!! The nursing, the ulceration, the pediatrician..the whole thing. I am so happy for you that the propanolol is working so well. At the time of my daughter's treatment, that drug was not offered. She was on steroids and did well with it and got good results, but I was always a wreck about potential side effects and our pediatrician at the time was in a battle with the specialist about using the steroids. It is so frustrating to me that we went through this 7 years ago and people like you are still going through it now and that some pediatricians are still in the dark about potential complications of lip hemangiomas. As far as I'm concerned, lip hemangiomas should go directly to a specialist asap, especially when parents start complaining about the child's difficulty with bottles/nursing. My daughter screamed and screamed for weeks and then she had what I thought was a sore on her lip (I didn't know what an ulceration was at the time) and I called the ped. and was told just to put vaseline on it and that it didn't hurt. You can imagine my horror when we finally made it to the specialist and they told us she had an incredibly painful ulceration. We had to use a numbing gel for weeks so that she could nurse as it healed. So I totally feel your pain. Your daughter is soooo beautiful! I'm so happy that everything seems to be going better for you now. :) Keep us posted!

svsuengel 08-24-2012 06:16 PM

Smurph- I've seen your history/pics on other threads and thought that we would have the same story, that we waited too long and now our baby will have to deal with the effects growing up. The pics of your daughter were incredibly helpful in letting us know that everything would be okay and she will smile again, it was hard not to imagine the worst outcomes because I was blaming myself something fierce the few days we had to wait to start treatment.

I wish we had read the details a bit more closely, as some of the websites do advise that anything near eyes, nose or lips get checked out by a specialist. We were lulled a bit by how unconcerned our ped. was and how "common" birthmarks are and how they resolve without intervention in most cases. When the ulceration was tiny like a tic tac down inside by her gums, he said it didn't affect the usable surface of her lip and that's why no pain medicine was needed. It is frightening how quickly it spreads though. I was so worried about her getting an infection, especially a drug-resistant one in the hospital!

The ulceration has healed and left a gully? through her lip. Most of it is now inside her mouth, but you can still see the end of it at the top of her lip. A month after starting treatment, we are still battling to get her to take a bottle. I can't tell how much is normal breastfed baby stubbornness or if there is a pain association from trying to force the bottle on her before we realized what was wrong.

I will try to update pictures at 6,9 and 12 months. I was scouring for pictures like crazy when it ulcerated, so I will try to take better, lip-focused pictures for others to see how it turns out rather than the general ones I had taken.


smurph 08-25-2012 05:45 AM

Jess, Hang in there. Hindsight is 20/20. I have a hunch that the end result is going to be better than what you expect/fear. You still caught it pretty early on and it is responding well to treatment so I think it is all going to be ok. Yes, we chose for my daughter to have the surgery when she was 5 to smooth out the ulceration "divot" and scar because we thought it would be best for her in the long run, but even if we hadn't chosen the still looked good as it was and she would have been fine. Of course, I can't tell for sure, but I have a funny feeling you will be in the same boat there as well. I'm so glad we connected on here. It's good to meet others who have been through the same things. I know it has helped me. Definitely stay in touch! :)


Yeli44 09-01-2012 09:33 PM

Omg I'm going thru the same thing right now! My baby is 13 weeks today and has a hemangioma on bottom lip and since last week I noticed a blister and took her to her ped twice and said it was just a suckling blister and to just put Vaseline over it, but it wasn't healing and was getting bigger and my baby is in a lot of pain and crying non stop, I took her to urethane care last nite and they said it was a cold sore and finally have her meds. But now that I'm reading your post I'm wondering what it really is. I'm so frustrated I don't know what to do :( her ped that I didn't have to worry about her birth mark but now I feel like its more serious than what she made me think :(

Yeli44 09-01-2012 09:36 PM

Sorry . Autocorrect ... * I took her to urgent care

smurph 09-02-2012 12:45 AM

Wow. I cannot get over how this happens again and again! Maybe you could take her to a specialist to get another opinion. Where do you live?


Yeli44 09-02-2012 05:01 PM

I live In lake Elsinore California , since this weekend is a holiday on gonna have to wait until tuesday to talk to her doctor for a referral :(

smurph 09-03-2012 04:37 PM

I think Dr. Levitin and Dr. Nelson are out that way? I'm not sure. I'm from New Hampshire. But they are 2 of the best in field. Good luck!

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