Daughter has a hemangioma on lip and in mouth. I need advice! - Vascular Birthmarks Foundation Forum
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  #1  
Old 03-23-2004, 12:07 AM
tedg1979
 
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Default Daughter has a hemangioma on lip and in mouth. I need advice!

Hello everyone...

My 4 week old daughter has what I have been told is a hemangioma on her upper lip and inside her mouth along the inside of her cheek. I noticed a faint mark at birth but thought nothing of it. Mind you, the mark is not terribly large on her lip, and it is only slightly raised right now, but it has enlarged quite a bit from that faint mark I mentioned. And the mark inside takes up most of her inner cheek.

When talking to the ped. he gave me the "wait and see" scenario which I was fine with until I saw that the hemangioma is in her mouth. I don't want her mouth to become deformed should it enlarge.

What I need advice on is this: Should I insist on seeing a dermatologist? Is this more serious because it is in her mouth? Could it potentially cause a problem with her eating, speech, and breathing? Should I insist on having it removed while it's still early? Am I paranoid?? ??? It's hard not to be concerned since people have already begun with the "My gosh, what happened to her lip?" or "What is that, anyway?" My little angel is only a month old, and may have years of these questions in her future!

Any advice is appreciated. Thank you, Tara
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  #2  
Old 03-23-2004, 03:54 AM
nickbar nickbar is offline
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Location: Pacific Northwest
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Default Re:Daughter has a hemangioma on lip and in mouth. I need advice!

Yes yes yes...follow your instincts...I would strongly urge you to go see a specialist, particularly one that has experience with Hemangiomas. Try the Find of Physician link above to find a doc in your area, or post your location and ask for advice. There are a handful of wonderful doctors out there that are willing to treat these...treatment early is critical...it will save you from dealing with further damage to the skin/lip...etc.

Good luck.

Corinne
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  #3  
Old 03-23-2004, 12:39 PM
Kasandra
 
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Default Re:Daughter has a hemangioma on lip and in mouth. I need advice!

Tara,

You're not being paranoid. I would be concerned that the h would cause problems with teeth forming and, even more seriously, affect her eating.
I would insist on seeing a specialist. Most of us get the 'wait and see'. In some cases it might be warranted, but your case sounds serious. When a hemangioma impedes eating that can be very serious. A ped. derm. will probably be a good first step, but I would think you'll need to find a surgeon.
Like Corinne said, go with your instinct. It sounds like you're concerned for a good reason.

Good luck,
Kasandra & Abe (2/4/03 - superficial h between eyes)
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  #4  
Old 03-23-2004, 01:42 PM
eprmo eprmo is offline
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Default Re:Daughter has a hemangioma on lip and in mouth. I need advice!

I ditto all the aboves.... Go for as many opinions as you want...don't "wait and see"....

you know best,,,you asked all the right questions,,,so you are already,,,one step ahead!!!! You will find the right doctor with the strong sense of "need" that you have!!!!

Elissa
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  #5  
Old 03-23-2004, 03:33 PM
rpmalik
 
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Default Re:Daughter has a hemangioma on lip and in mouth. I need advice!

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

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  #6  
Old 03-23-2004, 04:23 PM
tedg1979
 
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Default Re:Daughter has a hemangioma on lip and in mouth. I need advice!

I just wanted to thank those that have replied to my posting! I am so happy to find other people that understand my position. Please keep the advice coming, I can use all I can get!

Thanks, Tara

P.S. I live in CT, and if anyone has info on other specialists, please let me know!
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  #7  
Old 03-23-2004, 04:46 PM
nickbar nickbar is offline
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Default Re:Daughter has a hemangioma on lip and in mouth. I need advice!

Tara,

Dr. Waner is the leading doc. you might want to contact him. He is in NYC now.

Corinne
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  #8  
Old 03-24-2004, 11:57 AM
katerina
 
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Default Re:Daughter has a hemangioma on lip and in mouth. I need advice!

Tara,
I have to agree with everyone. Get help as soon as you can. I'm worried that if you leave it alone, your baby may be in trouble when her little teeth come in. If her H keeps growing she may be biting it later on and causing herself pain . I suggest you keep looking until you find a doctor who will help you do something now.
Good luck
Fotini
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  #9  
Old 03-24-2004, 01:17 PM
Joanne
 
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Default Re:Daughter has a hemangioma on lip and in mouth. I need advice!

YES!! Please seek another opinion ASAP!!

My daughter Jaylee has an upper lip/nose h. We followed our ped. & did the "wait & see"!!
Big Mistake!! It ended up affecting her eating. We ended up in the emergency room !
She is now going on her 2nd surgery to remove the h from her lip & reconstruct both her lip & nose.
We've done steroids to make an immed. stop on the growth then to Vin Cristin to keep the growth down (so it would not affect her eating/breathing) until we did the first surgery in Oct. 2003.
If you have any questions you can e-mail me or you can find me in the msn support group post.
Best wishes for you & your family
Joanne (daughter Jaylee)
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  #10  
Old 03-25-2004, 02:40 PM
PaJean
 
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Default Re:Daughter has a hemangioma on lip and in mouth. I need advice!

I am an adult that has lived with any compound hemangioma of the lower lip and tongue for 36 years. I cannot stress enough the importance of seeing someone willing to work on the malformation NOW. I did not see the "correct" physician until I was 12 and it was too late to eliminate the tumors completely.

I see a plastic surgeon who has specialties in vascular and facial surgery.

Although mine continues to grow, he has changed my life.

May I suggest looking for a pediatric plastic surgeon (they do exist) who specializes in vascular surgery. behind their name. Mine is in Louisville, Kentucky, a little far from you but I'll give you his name anyway: Dr. Gerald Verdi, 502 895-5555--www.drverdi.com.

Good Luck


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