Hemangioma on Nose - Page 8 - Vascular Birthmarks Foundation Forum
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  #71  
Old 03-08-2011, 10:38 AM
missy missy is offline
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Amazing! You must be thrilled!

Missy
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  #72  
Old 11-07-2011, 12:46 PM
littlegreenlady littlegreenlady is offline
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Default any advice?

Hi there,

After a few days of getting really upset after viewing awful internet images of vascular birthmarks, I found this site and feel so relieved as I was getting really worried about my little girl's nose.

My 9 week old daughter has got a a nasal tip Hem. and it looks to me that it is both superficial (there is bright red area on surface of skin) and also deep (As there is a purplish area underneath the skin and the end of her nose has got a bit bigger). It started off as very small and pale when she was born but has grown a lot in the last few weeks and the bright read area has got bigger and more intense. Our doctor has referred her to a dermatologist at our local children's hospital in Bristol, U.K. We've got an appointment this week and I want to go along as informed as possible to get the answers/action that is best. I don't know if she should be referred for laser treatment ...there is an NHS laser treatment place in our city......does she need to be referred to a VB specialist??? I am worried that they will just say to leave it and I don't know if that is right advice???
I'd be so grateful for any advice (or links to other useful threads or websites)from others who had had similar experiences.
Thank you,
A
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  #73  
Old 11-07-2011, 03:53 PM
nickbar nickbar is offline
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Hello,

Yes, I do believe having a specialist evaluate her is important. If you email me I can send you a letter explaining why this is important and in the long run can save money.

One thing to consider when trying to convince them to start intervention: Nasal tip hemangiomas can be very stubborn and most do not go away without leaving some mild to significant destruction. Some concerns to go over with you doctors: Hemangiomas in this location often cause mis-shape, distruction to the cartilage, atrophied skin, breathing issues, etc. Your daughter's might not be that significant now, but early intervention in my opinion can eliminate or improve the final outcome.
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  #74  
Old 11-10-2011, 01:46 PM
littlegreenlady littlegreenlady is offline
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Many thanks Corinne.
The paed. dermatologist we met yesterday seemed very informed and suggested starting her on propranolol next week - in your experience does this sound like a sensible and proactive approach?
Many thanks,

Amy
liitlegreenlady@hotmail.co.uk
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  #75  
Old 11-13-2011, 02:22 AM
nickbar nickbar is offline
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Propranolol has become very popular for treating hemangiomas in the growth phase. It is important to have her closely monitored by a Cardiologist and/or hematologist/oncologist. Also, during the VBF conference last week I heard a specialist say that if you don't see results within the first two weeks to wean off. Results are typically very significant and quick! She may need to stay on propranolol until out of the growth phase. If weaned off and it starts to grow again, she can go back on it. Hopefully others will share their stories as well.
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  #76  
Old 11-28-2011, 07:25 PM
littlegreenlady littlegreenlady is offline
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Many thanks Corinne, that is really helpful. She has now been on it for 5 days, is being monitored by the children's hospital and we are starting to see a bit of improvement, so fingers crossed.
Thanks again,
Amy
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  #77  
Old 12-01-2011, 12:26 AM
nickbar nickbar is offline
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Thank you for the update Amy, Keep us posted.

Corinne
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  #78  
Old 12-29-2011, 04:38 AM
bumfuzzle bumfuzzle is offline
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Default Two Years Old

Hello everyone,

Ouest turned two a few days back and I thought it would be good to check in here.

Ouest is doing great. Her last laser treatment was nearly a year ago now and there hasn't been any growth. In fact it may have gone down a bit since then. It's hard for us to tell as we really don't even notice it any longer. And in fact nobody else has ever noticed it.

Her nasal tip shape is just ever so slightly imperfect and there is still just a hint of purple coloring as well, but both are so miniscule that it is nearly impossible for anybody but me and her mama to see it.





We don't anticipate needing to do anything further as far as treatment. Seems to us that even the tiny bump will continue to disappear as she gets older and her nose continues to grow.

Again, we were thrilled with the results of the laser treatments and credit Dr. Delfanian in Minnesota with keeping Ouest's nasal tip hemangioma under control and preventing it from growing. We really believe that attacking these early is the best method.

Anyway, we wish you all the best in your search for treatments and solutions for your own little ones.

Sincerely,

Pat and Ali
www.bumfuzzle.com
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  #79  
Old 12-29-2011, 01:10 PM
smurph smurph is offline
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She is absolutely beautiful!! Thank you for sharing these pictures. It is wonderful to see the progress.

Shannon
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  #80  
Old 12-29-2011, 02:12 PM
missy missy is offline
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She is stunningly gorgeous, as Shannon said. Dr. Delfanian is awesome, isn't he? I'm so glad you were able to get a great outcome!

Please remember to come back and let us know how Ouest's progress continues ... it does help other parents so much!

Missy
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