Vascular Birthmarks Foundation Forum - View Single Post - ulcerated lip hemangioma
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Old 01-05-2008, 04:32 PM
quinnysmom quinnysmom is offline
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Join Date: Jul 2006
Location: sault ste marie, ontario Canada
Posts: 16
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Lynn

My son Quinn had a very severe lip ulceration. I am so sorry to hear your little one is going through this as they are very painful. My son's case was severe but hopefully I can give you some advice.

Quinn lost a lot of lip tissue from using a bottle (before he was diagnosed properly we were told he had port wine) Each time he would feed the tissue would get stuck to the bottle. After awhile it was to painful for him to eat. He ended up with an NG tube to feed so that his lip woulod have a chance to heal.

There is a special type of bottle that you might find very useful called the Haberman bottle, commonly used for cleft lip and palate. It enables the child to be fed from an area of the mouth that is not affected. This helped my son greatly and enabled his lip to heal.

When Quinn was put on steroids his lip began to heal quickly which was a blessing considereing how bad it was. his doctors do believe that the steroids enabled his lip to heal so quickly but this is not always the case as some children require laser to stop an ulcer. We had an appointment for laser set up but the steroids helped heal his lip so we cancelled it.

Ulcerations can cause scarring and keeping it moist with Aquaphor or vaseline (we used vaseline as Aquaphor wasn't available in Canada) the big thing is to avoid as much friction as you can and keep it moist 24 hours a deal to promote healing and help minimize scarring when it does heal.

If you need anything else please let me know. My email is

all 4 quinny @hotmail.com (without spaces)

Jen Duncan
Mom to Quinn 20 Months PHACES,Segmental,Compound,Internal and Intra-Cranial Hemangiomas
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