Daughter has a hemangioma on lip and in mouth. I need advice! - Vascular Birthmarks Foundation Forum
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Old 07-04-2008, 04:18 PM
Liz64 Liz64 is offline
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Join Date: Jul 2008
Posts: 2
Default VM - Inside right side of mouth and upper lip and spreading out

Hello Rajeev / Tara:

I'm in Chicago and my daughter has a VM inside her mouth on the right side of her cheek and is spreading to the upper side of her lip, currently at the edge of her mouth. She ha seen Dr. Mancini along with all his group specialist (plastic surgeon, radiologist, laser doc, etc.) and was recommended to have plastic surgery when she turns 3. She is 28 months right now. I am worried because from being a subtle dot, it is gradually growing.

My question to both of you is: Since your postings are relatively old, what are the current status on your daughter's VM? Any information is greatly appreciated,

Liz



Dear Tara,

You cannot afford to take chances with Hs on the face and inside the mouth. Our daughter has a similar distribution (known as "beard distribution") on her face below her mouth and inside her cheek and gums. What your Ped may not know (or remember from Med School) is that if the H is internal, it may extend down your daughter's throat and internal Hs can grow and obstruct her airway.

OUr little girl had one below her vocal chords, called a sub-glottal H. Luckily we put her on steroids at 4 months and the obstruction never grew past 30% of her airway. At 10 months her airway was completely clear. However, since age 4 months we have been seeing a Pediatric Dermatologist monthly and an Ped ENT doctor once we knew she had the internal Hs.

YOU NEED TO GO TO A SPECIALIST. And by specialist, I don't just mean Dermatologist. You want a Pediatric Dermatologist and preferably one with experience with Hemangiomas.

We use Dr. Mancini at Children's Memorial in Chicago. I don't know where you live, but you can find a physician using this board.

Good luck.

Rajeev Malik[/quote]
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