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  #1  
Old 01-15-2009, 10:05 AM
AddisonsMom AddisonsMom is offline
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Red face New concerned parent

My name is Carolann and my daughter, Addison, has a hemangioma on her left eye lid and on the back of her neck. Her pedi keeps telling me not to worry about it and that it should dissipate by the time she's 2. However I have done some research and asked around and I've heard different... I am debating if I want to try and get it removed or if we should wait it out...? I hate that anytime someone meets her thats all they see. I would love for it to be gone! However, I REALLY do not want to put her through any unnecssary medical tasks...
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  #2  
Old 01-15-2009, 12:17 PM
missy missy is offline
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Can you post a photo?

Sometimes, the appropriate treatment is to let them involute on their own, however, it should be evaluated by a specialist in your area to help make that determination.

Missy
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  #3  
Old 01-15-2009, 04:29 PM
jgoodman0814 jgoodman0814 is offline
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if its on her eyelid, you might want to have her looked at by an opthamologist to make sure its not affecting her vision. as far as involution goes, it can take up to 2 years. children start to develop self awareness between ages 1 1/2 and 2 1/2 years old. we had our daughters removed at 11months. shes 18 months now, and realizes that even with a scar there that her right arm is different than her left arm.
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  #4  
Old 01-15-2009, 09:49 PM
AddisonsMom AddisonsMom is offline
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Quote:
Originally Posted by missy View Post
Can you post a photo?

Sometimes, the appropriate treatment is to let them involute on their own, however, it should be evaluated by a specialist in your area to help make that determination.

Missy
Let me see if I can figure it out....



Did i do that right??

Last edited by AddisonsMom : 01-15-2009 at 09:50 PM. Reason: Trying to post a pic....
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  #5  
Old 01-16-2009, 12:17 AM
missy missy is offline
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If you can't post it, you can email it to contact@birthmark.org as an attachment and I'll post it for you.

Missy
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  #6  
Old 01-16-2009, 05:54 PM
khubbard khubbard is offline
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My little girl Caroline has a compound hemangioma directly underneath her right eye which appeared and began growing rapidly between 3-6 weeks of age. Our pediatrician also reassured us several times that it would "go away on it's own." My husband and I finally insisted on a referral to a specialist and she was treated with steroids for 3 months and just finished treatment. If we had not sought treatment when we did I can't imagine how big the hemangioma would have gotten. All of this to say, my advice to parents now is to always trust your instincts. It can never hurt to get a second opinion and we found that there are many ways that hemangiomas can be treated, especially when there is potential danger to a vital organ or function (the eye, for example). It is frustrating to me that most pediatricians seem to automatically tell parents "don't worry, it will go away" when many times it is much more complicated than that. "Waiting it out" is sometimes the best thing to do, but sometimes it's not.
Feel free to check out Caroline's story and our experience at http://hubbardbabynews.blogspot.com
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Old 01-18-2009, 03:40 AM
AddisonsMom AddisonsMom is offline
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Quote:
Originally Posted by khubbard View Post
My little girl Caroline has a compound hemangioma directly underneath her right eye which appeared and began growing rapidly between 3-6 weeks of age. Our pediatrician also reassured us several times that it would "go away on it's own." My husband and I finally insisted on a referral to a specialist and she was treated with steroids for 3 months and just finished treatment. If we had not sought treatment when we did I can't imagine how big the hemangioma would have gotten. All of this to say, my advice to parents now is to always trust your instincts. It can never hurt to get a second opinion and we found that there are many ways that hemangiomas can be treated, especially when there is potential danger to a vital organ or function (the eye, for example). It is frustrating to me that most pediatricians seem to automatically tell parents "don't worry, it will go away" when many times it is much more complicated than that. "Waiting it out" is sometimes the best thing to do, but sometimes it's not.
Feel free to check out Caroline's story and our experience at http://hubbardbabynews.blogspot.com
Thanks and I appreciate your reply, but since my daughter has medicaid (and we most definetly canNOT afford any procedures out of pocket) I dont know what we can do...? Her pedi has been telling us over and over to just wait it out...
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  #8  
Old 01-18-2009, 01:09 PM
missy missy is offline
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Default Addison's Photos

Here you are!

Missy
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File Type: jpg addison-379.jpg (8.5 KB, 72 views)
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  #9  
Old 01-19-2009, 01:54 PM
jgoodman0814 jgoodman0814 is offline
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my daughter was on medicaid for a the first few months of her treatments with a hemotologist. all you have to do is get your pedi to referr you to one and medicaid will approve it. especially if its conginital. i wouldnt wait this out. like i said before, you might want to make sure its not affecting her vision. let me know if you need any help with this issue. dont take no for an answer, even if your on medicaid! you can also see her story on the site below.
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Last edited by jgoodman0814 : 01-19-2009 at 02:02 PM.
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  #10  
Old 11-19-2009, 02:52 AM
Kellyl Kellyl is offline
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My 6 month old boy has a hemangioma on his neck and his nose. The specialist at Children's Hospital told us to leave it alone unless it gets larger. Does anyone have any suggestions? I really want to get it removed.
Thanks :0)
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