Vascular Birthmarks Foundation Forum - View Single Post - Lower lip hemangioma
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Old 08-16-2012, 09:47 PM
svsuengel svsuengel is offline
Junior Member
Join Date: Jul 2012
Posts: 3
Default 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.

Last edited by svsuengel : 08-17-2012 at 04:26 PM.
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