Hemangioma on head-7weeks-advice please - Vascular Birthmarks Foundation Forum
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  #1  
Old 03-08-2013, 07:48 PM
SarahJ SarahJ is offline
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Default Hemangioma on head-7weeks-advice please

My daughter's hemangioma was present at birth, but was flat. Since then it has become raised and increased in diameter. The pediatrician has said there is no treatment available unless it is by eyes, nose, or mouth. Yesterday I started looking online and am now very concerned. I had no idea how big they can grow. What should my next steps be? After looking at some other posts I feel like my daughter's is pretty large for just being 7 weeks old. Please help. I would love advice and support. I tried to load a pic, but it says it won't attach. The size is about 1".
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Old 03-08-2013, 08:28 PM
smurph smurph is offline
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Hi there! I'm glad you found this forum. It can be hard at the beginning because it is difficult to know how big it will grow- especially when you start looking around at pictures online! Sometimes the pictures you see online are the most extreme so keep that in mind. Try not to get too freaked out I did the same exact thing myself though! ha ha!

You can email a photo to:
contact@birthmark.org

and Missy will attach it for you. Where did you live? Maybe you could see a specialist and just find out what your options are anyway. There are treatments available so it would depend on the doctor's opinion and what you feel comfortable with. I would suggest taking pictures of the hemagioma like once a week so you can document any changes. It is usually helpful for doctors to see them as a record of its growth. Most hemangiomas do go away on their own but sometimes it's better to treat. Usually the specialists who deal with these things every day are the best at letting you know the options that are best suited to your situation. Good luck!
Shannon

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Old 03-08-2013, 08:39 PM
SarahJ SarahJ is offline
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Thank you for your response. I sent the pictures to Missy. I also sent them to one of the experts linked to your site. I am setting up an evaluation with a dermatologist, but I want to be well-informed when I speak to them. I am definitely going to monitor the growth and document with pictures. Thank you for your support. The hardest part is not knowing how big it will get.
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Old 03-09-2013, 03:11 AM
smurph smurph is offline
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I know. I've been there. Not knowing is the hardest part. Let us know how it goes!
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Old 03-09-2013, 02:22 PM
missy missy is offline
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Here you go!
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File Type: jpg DSC_0249.jpg (9.4 KB, 0 views)
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  #6  
Old 03-10-2013, 07:50 PM
SarahJ SarahJ is offline
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Thank you for posting my pictures. I would like to find other parents who have had a child with a similar hemangioma to see what they chose to do. I did contact an expert who says it can be removed surgically and it is a good idea to do it before she gets much older. I would only want to pursue that if I knew it would get really big. I am plan see a dermatologist this week and go from there.
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Old 03-11-2013, 12:27 AM
missy missy is offline
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Let us know what happens.

Missy
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Old 03-11-2013, 04:37 AM
tspope tspope is offline
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Old 03-12-2013, 04:26 PM
SarahJ SarahJ is offline
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I met with the pediatrician yesterday and got a referral to see a pediatric dermatologist. I feel good that this is a step in the right direction. I am not sure how long the wait will be, maybe a few weeks. The dermatologist who saw her hemangioma yesterday mentioned propranolol as a treatment and not surgery. I guess I will find out more at our next appointment. In the meantime I hope it doesn't grow much and I will continue to take pictures.
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  #10  
Old 03-12-2013, 07:37 PM
tspope tspope is offline
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I am in a similar situation. Just a little further down the road. Feel free to contact me.
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