Hemangioma on head-7weeks-advice please - Page 2 - Vascular Birthmarks Foundation Forum
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  #11  
Old 03-12-2013, 09:43 PM
missy missy is offline
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Good luck, Sarah, and keep us updated!

Missy
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  #12  
Old 03-13-2013, 03:13 PM
SarahJ SarahJ is offline
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Thank you everyone.

tspope I sent you an e-mail. Thank you.
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  #13  
Old 03-16-2013, 03:14 AM
brownjo3 brownjo3 is offline
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Sarah - Our son has a hemangioma covering about a quarter of his face.

Here are some pictures.

http://www.facebook.com/media/set/?s...20810&type= 1

We started proparanol around week 5 and as you can see it has had dramatic progress. He is about 9 months old now and the reduction has slowed but according to our pediatric dermatologist this is expected. If you want to talk further you can find me on facebook at:

http://www.facebook.com/john.brown.549/about

It was a scary process at first but after a lot of research we became really comfortable with the process and the medicine.
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  #14  
Old 03-17-2013, 03:09 PM
SarahJ SarahJ is offline
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Thank you Brownjo3. Your son is so cute and sweetl! It is nice to have found support on this forum. We have an appointment on April 19th and we may be offered the propranolol as a treatment choice. I am so happy to see the success that your son has had. These are hard decisions to make for our little babies.
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  #15  
Old 04-07-2013, 07:05 PM
mjwrw mjwrw is offline
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Hi Sarah,
Your baby is beautiful! I know how worried you must be. My daughter, who is now almost 7 had a large hemangioma in the center of her forehead. She had surgery at 13 months. Propranolol was not a known option at the time we were going through this so I can not speak to that but I can say we have now regrets about our decision and are so happy with the results.
I have attached a picture here from her first birthday, about five weeks prior to surgery. For some reason I can only attach one photo at a time so I will attach a more current photo in a separate post so you can see what she looks like now.
Good luck with your sweet baby!
Rory
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  #16  
Old 04-07-2013, 07:07 PM
mjwrw mjwrw is offline
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Sorry to post twice, but here is a photo from a few months ago, 5 1/5 years after surgery.
Good luck!
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  #17  
Old 04-07-2013, 07:12 PM
SarahJ SarahJ is offline
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Thank you Rory. Your daughter is beautiful! We are still waiting and watching right now. It is nice to have gotten so much support through this forum. Thank you for sharing your story and posting pics.
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  #18  
Old 05-10-2013, 04:23 AM
kfarver kfarver is offline
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I just joined and my daughter is 5 weeks with a growing h Aprox same spot as yours but on the other side of her head. Have you received any further treatment or advice?
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  #19  
Old 05-10-2013, 01:32 PM
zila2013 zila2013 is offline
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Default Propanolol is working

My daughter who is now 3 months has two strawberry surface hemangiomas. One on her neck and one above her belly button. During our daughters first well visits our pediatrician recommended we see a doc who specializes in treatment of vascular malformations. We got an appointment with her when our daughter was about 5 weeks old and she began topical timolol gel ointment which is applied only to hemangioma surface. Both hemangiomas have not grown bigger and the one on her neck is now greying in the center and has faded in some areas and become dark maroon in others,which i've read is a sign of involution. The doctor said the earlier you begin treatment the better results and the topical timolol doesn't hurt to try because there is minimal side effects to topical. She also said you can wait and see what happens but if you start a treatment when it is still in a growth period early on you may have better results. Go see someone about it as soon as you can and tell them you have heard that beta blockers applied topically also work! There is literature out there now to support this and this treatment is very affordable. I feel lucky that we live in New York City and have access to specialists that are aware of new treatments.
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  #20  
Old 05-11-2013, 03:18 AM
SarahJ SarahJ is offline
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Hi kfarver,
We were offered propranolol as a treatment, but have chosen to "wait and see" and continue to monitor its growth. Many people have seen great results with propranolol, but we are hesitant to start her on medication at such a young age. It is not bothering her and has not grown as rapidly as I feared it might in the beginning. Of course I do not know how big it will get or how long it will take to go away. My dermatologist says the main concern in our case is hair loss which may mean that she may need surgery at some point to help eliminate a bald spot. There are surgeons out there that will remove hemangiomas early on if you feel like that is what you want to do, but it is not usually covered by insurance as it is seen as cosmetic. I hope this helps. I was really concerned in the beginning also, but I think talking to a dermatologist and talking to other parents has helped a lot. It is so nice to know we have options and treatments available if we change our minds.
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