lower lip hemangioma

mrssied · #1 09-09-2009, 05:51 PM

my daughter is 4 months old and has been on prednisone for about a month now. It worked great for the first 2 weeks and we keep uping the dose but it doesn't seem to be shrinking any longer. The ulceration has healed and is not causing eating problems any longer. THe dr. mentioned viscristine the last time we went in but the pediatrician said to stay away. Anyone have any experience with this? I am scared to put her on this since she is so little. The say the H will go away and shrink on its own. It is the whole bottom lip and goes into her gums.

missy · #2 09-09-2009, 11:51 PM

Where are you located? If the hemangioma is as involved as you say, then you need to see a specialist. There are other treatment options to consider.

Missy

mrssied · #3 09-10-2009, 12:01 AM

we are in RI, and seeing a dermatologist who works with the VAC in Boston.

missy · #4 09-10-2009, 12:25 PM

Can you go to

http://birthmark.org/node/46

and fill out the Ask the Founder form and include a photo. I think, if the lesion is as involved as you say, that you should seek another option or opinion. If you fill that form out, I can send it to Linda, who can give you a much better answer and she can send it on to another physician as well.

Missy

mrssied · #5 09-10-2009, 12:59 PM

I can't seem to make my picture smaller, I am not very computer savy

The ulceration has healed and the H has shrunk but we have not seen it get smaller since the dose has increased.

missy · #6 09-10-2009, 10:43 PM

if you will send the photo to admin@upstatesites.com I will have time tomorrow afternoon and can shrink it enough to send it out or post it.

Missy

mrssied · #7 09-11-2009, 12:14 PM

done..thank you!

missy · #8 09-11-2009, 05:33 PM

Here ya go. I will also send this out to Linda and see if she has any advice.

Missy

nickbar · #9 09-12-2009, 04:22 AM

Hello, my name is Corinne and I am the VBF Administrative Director/Family Services. I don't believe I have seen your email come through "ask the expert". Linda often forwards them to me.

I would recommend getting another opinon on options for your daughter. Involution can take more time. Please feel free to email at the address below any time.

mrspdubyu · #10 09-30-2009, 08:39 PM

My daughter had a lower lip hemangioma as well. We did oral steroids, laser treatments, and oral steroid shots to her lip. Her lip became deformed after all these treatments.

We finally got it removed by Dr. Milton Waner at the Vascular Birthmark Institute in NYC. (We live in Chicago). I would recommend having it surgically removed as soon as possible. It will not involute ... it will come back ... My only regret is that we didn't get it removed sooner. My daughter was 17 months before we had it removed.