Daughter has a hemangioma on lip and in mouth. I need advice! - Page 2 - Vascular Birthmarks Foundation Forum
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  #11  
Old 07-04-2008, 04:18 PM
Liz64 Liz64 is offline
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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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  #12  
Old 07-04-2008, 05:03 PM
Liz64 Liz64 is offline
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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
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  #13  
Old 08-11-2008, 09:34 PM
manijo manijo is offline
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Join Date: Feb 2008
Location: Greece
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Hello,
my son has an H on te lower lip and he had it in his mouth also.
We followed the wait and see approach but it wasn't very helpful.
When the lip strted bleeding and went to see the plastic surgeon he tod us that e should check his inner organs (liver, intestine etc) for other Hs because hen there is an inner H like that in the inside of the mouth there might be as well others too.
I suggest you don't wait. You should chck the Hs with other experts too.
As far as the wait and see approach, the only thing that -my experience has taught me- causes is cosmetic problems.
Good luck!
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  #14  
Old 04-12-2011, 11:53 AM
shahid shahid is offline
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Hi everyone,
My daughter is 09 weeks old & Hemangioma at the lower lip inside the mouth stretches upto lower gum.We noticed it when she was 02 weeks old.Slowly it stretching to the upper side of the lower lip.Now,my ped advised to wait & see until 02 years of her age without any medication or surgery.I'm scared if it further hampers her mouth or deteriorate it further.I live in Bangladesh & want to get my cutie pie soon recovered by any sort of treatment.Please suggest.

Shahidul huq
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  #15  
Old 04-12-2011, 09:23 PM
Jenni Jenni is offline
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Join Date: Apr 2011
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Default Lip Hemangiomas

Hi Tara,

My daughter is 3 weeks old and was just diagnosed with a lower lip hemangioma. Lucy's also started as a faint spot on her lip at birth. I thought it was a nursing blister. After a week I noticed that she also had a large one in her mouth that extends from her lower lip to her gum line.

My daughter has been seen twice by a pediatric dermatologist that specializes in hemangiomas. She put Lucy on Timolol yesterday, which is a topical medication/drops that I put on her hemangiomas 2x daily. She decided to go this route first because it has the least amount of side effects. If the hemangioma continues to grow she said that the next step would be steroid injections, which I'm praying we won't need. Lucy has had only 3 doses of the meds so far, but the hemagioma appears to be less purple than before, so I'm cautiously optimistic. The doctor also mentioned that in her experience, hemangiomas that are located on thinner skin (i.e., lip/mouth, eye lid, etc.) appear to do the better with topical meds than other regions.

Hope this was alittle helpful. I agree with everyone that you should try to locate a specialist. Please update.....I too have just started this journey and would love to hear what others are doing for treatment. Thanks.

Jenni
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  #16  
Old 04-14-2011, 01:12 AM
nickbar nickbar is offline
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Location: Pacific Northwest
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Jenni,

Keep us posted on how the Timolol is doing. I would also recommend that if you continue to see growth to contact your doctor right away and share your concern. I would also recommend getting opinions from our ask the expert physicians on other options that might be plan B. Hemangiomas are very common, so many pediatric derms see them very often, but the treatment plans have really advanced over the last couple of years and it really is a good idea to hear from the specialists that keep up on new protocols for treatment.
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  #17  
Old 04-14-2011, 03:47 AM
smurph smurph is offline
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Hi Jenni!
My daughter had an upper lip hemangioma... she is 6 now and I'd love to chat with you about it and share our journey if you want to email me: hohen13@comcast.net. I also have some pictures you can look at (see my other post: updated hemangioma pictures after laser treatment-there's a whole album that shows the progression.)
Shannon
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