Daughter has a hemangioma on lip and in mouth. I need advice! - Vascular Birthmarks Foundation Forum
  Vascular Birthmarks Foundation Hemangiomas  |  Port Wine Stains  |  Vascular Malformations  
VBF logo

1994 - 2014
Celebrating 20 years with
75,000 networked into treatment

Dr. Linda Rozell-Shannon, PhD President and Founder

   VBF 20th Anniversary Gala Friday, October 10, 2014 in New York City

VBF 2014 Annual Conference Saturday, October 11, 2014 in New York City

Donate to VBF    Shop VBF Products

Go Back   Vascular Birthmarks Foundation Forum > Hemangioma Help > Help and Resources for Hemangiomas

Reply
 
Thread Tools Display Modes
  #1  
Old 03-23-2004, 01:07 AM
tedg1979
 
Posts: n/a
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
Reply With Quote
  #2  
Old 03-23-2004, 04:54 AM
nickbar nickbar is offline
Senior Member
 
Join Date: Aug 2003
Location: Pacific Northwest
Posts: 1,054
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
__________________
Corinne Barinaga
VBF Director of Family Services
vbfadvocate @ live. com (no spaces)
Reply With Quote
  #3  
Old 03-23-2004, 01:39 PM
Kasandra
 
Posts: n/a
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)
Reply With Quote
  #4  
Old 03-23-2004, 02:42 PM
eprmo eprmo is offline
Senior Member
 
Join Date: Dec 2003
Posts: 133
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
__________________
Elissa Rifkin
VBF Developmental Specialist
psyelectro@aol.com
Reply With Quote
  #5  
Old 03-23-2004, 04:33 PM
rpmalik
 
Posts: n/a
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

Reply With Quote
  #6  
Old 07-04-2008, 05:18 PM
Liz64 Liz64 is offline
Junior Member
 
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]
Reply With Quote
  #7  
Old 07-04-2008, 06:03 PM
Liz64 Liz64 is offline
Junior Member
 
Join Date: Jul 2008
Posts: 2
Default

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
Reply With Quote
  #8  
Old 03-23-2004, 05:23 PM
tedg1979
 
Posts: n/a
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!
Reply With Quote
  #9  
Old 03-23-2004, 05:46 PM
nickbar nickbar is offline
Senior Member
 
Join Date: Aug 2003
Location: Pacific Northwest
Posts: 1,054
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
__________________
Corinne Barinaga
VBF Director of Family Services
vbfadvocate @ live. com (no spaces)
Reply With Quote
  #10  
Old 03-24-2004, 12:57 PM
katerina
 
Posts: n/a
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
Reply With Quote
Reply


Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

vB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump