Non-severe hema on jaw line / propranolol - Vascular Birthmarks Foundation Forum
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  #1  
Old 06-12-2010, 04:00 PM
sonoma sonoma is offline
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Default Non-severe hema on jaw line / propranolol

Hi
My 4 week old daughter has a deep hemangioma (colorless) on her jaw line. The bump is about 4x4 cm right now but appears to be growing rapidly. We went to see a specialist and it does not appear to be causing any functional damage (i.e. eye sight, airway, eating, etc) and as a result, it would not be classified as severe. If we eventually put her on propranolol it would be for cosmetic reasons. So currently we are weighing the side effects of the drug to the potentially disfiguring hemangioma. Has anyone on the forum been put on propranolol when the hemangioma has not been classified as severe? We are struggling with the moral dilema of putting her on propranolol for something although (potentially) disfiguring, it is only short term, or a maximum of 10 years.

Also, if anyone has pictures to share or a story of how big the hema (in similiar location) was prior to involution I would greatly appreciate it.

Thanks for sharing.
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  #2  
Old 06-12-2010, 09:38 PM
missy missy is offline
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Hi and welcome!

Lots of parents here have chosen to use propranolol on hemangiomas that have not been classified as severe. Although, if the lesion is growing at the rate you say, then the reason maybe wouldn't be cosmetic. If she will end up with an unsightly and disfiguring pocket of skin that will need surgery, then consider that the propranolol is helping you avoid a future surgery.

Parents will stop by soon and put in their two cents!!

Missy

PS... what have you been told about the side effects?
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  #3  
Old 06-13-2010, 03:55 PM
sonoma sonoma is offline
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Hi Missy,

Thank you for responding. I'm sure a lot of parents struggle with whether or not to start medication if it is not deemed necessary for medical purposes. It has been difficult watching the lesion grow on her cheek and having to wonder how big it might potentially get or if she will get more that might be potentially harmful.

We are seeing Dr. Freiden in SF. In our next visit which is in two weeks we will be discussing propranolol in more detail. Based on my internet searching (and what I've learned from this forum) I believe some of the potential side effects include excessive fussiness, lethargy or low pulse (low blood sugar or pressure). I'd be happy to share anything I learn from the Dr in this forum. This is such a great way to share recent news and information.

Thanks.
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Old 06-13-2010, 10:04 PM
missy missy is offline
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You are in good hands with her! Dr. Freiden is a good physician. Let us know how your next appointment goes.

Missy
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  #5  
Old 06-13-2010, 10:05 PM
mperron mperron is offline
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I agree with Missy's reply. My son's hemangioma was not severe at the time we started the propranolol but because of its location we were concerned that it would become severe depending on how much it grew. Theirs also the potential for hemangiomas to become problematic when they ulcerate which is another factor to take into consideration as well as the pocket of skin that may be left as Missy mentioned.
I have been very impressed with the propranolol. Although I initially too experienced a moral dilema of putting my son on the drug, I decided in the end to trust my instincts. Of course, others may have differing opinions, but it is your own opinion that matters.
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Old 06-13-2010, 11:02 PM
sonoma sonoma is offline
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mperron --

thanks for your response. how old was your son when you started him on propranolol?
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  #7  
Old 06-14-2010, 12:14 AM
lbk0704 lbk0704 is offline
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I wish that I could have started the propranolol before my daughter's hemangioma ulcerated. It was a very heartbreakingly painful time for her that I wish I could have avoided. I told my doctor that at our last visit and she seemed to agree. I think being proactive with a rapidly growing hemangioma is probably a very good idea. The faster they grow, the more the propensity towards ulcerating, which you want to avoid.
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  #8  
Old 06-14-2010, 01:32 AM
mperron mperron is offline
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My son was 2months old when we put him on propranolol. His hemangioma was growing at a fast rate at that time.
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  #9  
Old 06-19-2010, 02:59 PM
momof3inpa2009 momof3inpa2009 is offline
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My daughter also had a "deep" hemangioma (we call it her bumpy) and it is by her left eye. Because it got so large that it was starting to make her eye lid droop, etc. and they were worried about "depth perception" they decided it was time to treat her (back in Febrary) and we went the propanolol route. I am so glad we did it! I've heard of many sucess stories about propanolol and "deep" hemangiomas. In fact my daughter's dermatologist told us about a little girl with a deep one on her jaw/cheek and how large it was and then told us how small it got to after using the propanolol. She started it after my daughter did it. My daughter was the first in the practice to do it and the last I heard there were 5 or 6 more using the propanolol treatment. Good luck and let us know how it goes. Feel free to read my blog below and contact me thru the blog.
__________________
Deep hemangioma on left eyebrow towards nose
Started propanolol Feb. 11th, 2010
Off of propanolol aprox. June 2011
Takes 3 doses per day at 1.3ml
2nd Weaning of prop. not a success back on it March 22. Only one dose of 1.3ml now- 19 months old Did Timolol gel for awhile, stopped, & back on - 4 years old. Off of Timolol -doesn't seem to be doing anything. Surgery was a success!!! April 2014
http://lexihemangiomapropanolol.blog...roduction.html
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