Haemangiomas of infancy - Vascular Birthmarks Foundation Forum
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  #1  
Old 03-06-2008, 07:27 PM
dylansdad dylansdad is offline
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Default Haemangiomas of infancy

Hi, I wanted to share our experience with Dylan and his haemangioma since birth, and possibly get some feedback on our choices. Dylan is going to be 4yrs old next month and was born with a haemangioma on the left side tip of his nose. As with most information we have read his did not appear until about 3 to 4 weeks after birth. It did go through the growth stage and then leveled off. It was very noticable, red, bluish, puffy and everyone asked "did he hurt his nose?". After a while when asked this question we would reply "no we just smack him every time he wets his diaper". Any way, we did the usual doctor visits and were glad to know it was isolated to his nose. The plan was to let it alone and see if it will take the path of most haemangioma's, go away. We are pleased with it's progress as most, if not all, of the discoloration is gone and all that remains is the soft fatty tissue which is slightly puffy. One vein is slightly visable in the right light.
The decision to do nothing was not easy, we wanted it gone and when it reached its peak along with the social interaction, I wondered if we had done the right thing. I am glad to say that Dylan has done better with it than we have and goes to pre-school and has no psycosocial issues. So, a little reassurance to those who choose to listen to their doctor if advised as we were.
My question is, has anyone gone through a similar situation and has the haemangioma completly gone away? He is about to start his journey into kindergarten and school and if anything needs to be done, we should consider it now. I can post pictures, as we have many.
Thanks, great site, hang in there everyone.
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Old 03-06-2008, 09:16 PM
missy missy is offline
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Hi Dylan's Dad:

Thanks for a great post! Dylan sounds like an awesome kid!

It is difficult for many parents to take the "wait and see" approach. And many times, waiting for the birthmark to involute is the appropriate course of treatment. Meaning, it's less invasive and much less risky to let a smaller hemangioma run its course.

But an experienced physician will weigh the pros and the cons of all treatments.

I have heard of cases where the birthmark went totally away with no need for any treatment afterwards... I mean, no corrective measures were needed.

If you post a photo, though, I'm sure everyone will give their opinion.

Take care,

Missy
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  #3  
Old 03-07-2008, 01:14 AM
nickbar nickbar is offline
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I have a great person to direct you to. VBF's very own Elissa Rifkin. Her daughter is 18 and had a nasal hemangioma and did not have treatment until later in life. She may see your post and reply or you can email thru ask the expert on the front page of this site. She is a clinical psychologist.
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Old 03-07-2008, 04:59 PM
eprmo eprmo is offline
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Hi,

I'd be glad to answer any questions you may have. As Corinne said, my daughter grew up with a nasal hemangioma, and had ZERO interventions until she was 11 years old. You can email me and send a photo or two to my email.

psyelectro@aol.com

mention VBF in subject
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  #5  
Old 03-10-2008, 11:34 AM
Rachel06 Rachel06 is offline
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Good for you - I think that if the child is comfortable and the parents are comfortable - then that is half the battle. I actually did the opposite - course we had some vision threatened - and Rachel's were ulcerating and very aggressive. But, we also have a nasal tip h - inside the nostirl on the side too. Sounds like that is what you are saying - is it superficial or compound. Sounds like you are saying compound. Anyway, we are fortunate enough to be able to leave the nasal tip for now. It does appear blue when she is excited or crying - and not nearly as noticable as what we went through - but there is evidence that the cartlidge is destroyed in the nostril area and some in the tip. The side with the h in it droops a tiny bit - only a mother would notice - but... we are looking ahead to when it completely softens - we will need to intervene to keep a "normal" appearance. The nostril will continue to droop and the tip may or may not need intervention - if it begins to "cave". She has already been through so much - we truly loathe the idea of more surgery - but we have been so pleased with her progress, we will determine in a few years. I wish you well wtih your journey. Feel free to e-mail me privately and I am more than happy to share photos with you. sherrirfoster@sbcglobal.net
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Old 03-16-2008, 12:20 AM
EJsMommy EJsMommy is offline
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Thumbs up Congrats!

I am happy to hear that your boy is doing well and that his H is going away on its own.

I also love the come-back you give people when they ask about it. Some people handle the questions and comments better than others, but I'll be honest when I say that I am getting to the point where if I hear one more rude comment or another "grossed out" stare at my baby, I'm going to be saying witty and sarcastic comments as well. I try to have tolerance for those who don't know any better, but I"m only human, eventually having a funny come back helps to make light of the situation. But, all in all, it's great to hear about his Hemangioma going away!

I myself have chosen to pursue treatment. I have been unsuccessful in obtaining approval, but I'm working on it. Dr. Waner thinks her hemangioma needs to be removed, due to it's location and how swollen it is, but of course that is all dependent on the individual Hemangioma.

I'd love to see before and after photos of your son, if you could Thanks!
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