2 years on Propranolol - Vascular Birthmarks Foundation Forum
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  #1  
Old 01-14-2013, 03:37 PM
Mae Mae is offline
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Default 2 years on Propranolol

ok here goes my daughter started the meds at 4 months old
we go back to sick kids in toronto on wednesday that will be 2 years on meds has faded quite a bit since her second birthday, she is now 28 months
it is still warm and the veins to it are still prominent
they are starting to want to do the weaning process and i do agree i think 2 years is enough but we all thought there would have been much more progress by now

my fear is that it may start to grow again if the meds are discontinued and also was wondering about further treatments to truely have it gone

any opinions?
thank you
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Old 01-14-2013, 03:58 PM
hana1st hana1st is offline
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Hi Mae, Do you see Dr. Pope? My son is currently being treated for 3 hemangiomas, one being under his eye by her at Sick Kids. He is taking Nadolol and have seen amazing improvements and no side effects. Could you ask if your daughter could be switched to Nadolol or perhaps apply timolol topicly?
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Old 01-16-2013, 01:27 AM
Mae Mae is offline
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Quote:
Originally Posted by hana1st View Post
Hi Mae, Do you see Dr. Pope? My son is currently being treated for 3 hemangiomas, one being under his eye by her at Sick Kids. He is taking Nadolol and have seen amazing improvements and no side effects. Could you ask if your daughter could be switched to Nadolol or perhaps apply timolol topicly?
thank you so much I will ask about those meds
also we see dr. hoe, she has been great but not really good at offering other ideas
the mark is on her right cheek, and i now it's vain but i really don't want her to go to school with it if there are other safe options

will let you know what happens

again thank you
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Old 01-16-2013, 02:11 PM
smurph smurph is online now
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Hi there! If your daughter is 28 months, hopefully you won't have to worry about it regrowing again at this point. Usually hemangiomas are fading on the own by then. My daughter was on oral steroids until she was almost a year and when she came off it grew back slightly. I think they said that "rebound growth" might be about 10% but a few months later it started fading on its own. As a parent, it seems almost impossible to believe that at some point it will really begin to fade on its own....after all we have been watching it grow and get redder and redder for all that time and/or using meds to stop it from happening.
Here's my daughter's photo album. Steroids are different than propanalol so I'm not sure if the result would be different, but you'll be able to see that from 1 year old on.....it faded on its own. She did end up having surgery to correct a bump on her lip and a couple laser treatments at the end touch up the last little remaining redlines, but mostly it just faded over the course of about 3-4 years, with the most progress in the earlier years. But like I said, it would be a good idea to check with your doctor because I'm not sure of the differences between coming off propanolol vs. oral steroids.

http://www.facebook.com/media/set/?s...0902383&type=3

Hope that helps!
Shannon

Last edited by smurph : 01-16-2013 at 02:26 PM.
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Old 01-17-2013, 02:37 PM
hana1st hana1st is offline
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Hi Mae, How did everything go at your appointment yesterday?

Here are some pictures

one at my sons worst and one today
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File Type: jpg IMG_0426 (2).jpg (40.6 KB, 0 views)
File Type: jpg photo (21).jpg (78.2 KB, 0 views)

Last edited by hana1st : 01-17-2013 at 02:43 PM.
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