propranolol - 2nd time due to regrowth - Vascular Birthmarks Foundation Forum
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  #1  
Old 04-04-2010, 06:18 PM
agbaby agbaby is offline
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Default propranolol - 2nd time due to regrowth

My 11 month old daughter has been off propranolol for 2 months and we have noticed regrowth of the hemangioma back to its original size. The propranolol that she was on for a few monhts seemed to work by decreasing the size somewhat.

Has anyone had an experience restarting propranolol a 2nd time? Does it work the 2nd time?
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  #2  
Old 04-04-2010, 10:57 PM
missy missy is offline
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I can't think of anyone who did a second round. I'll be interested to see everyone's responses.

Missy
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  #3  
Old 04-05-2010, 10:07 PM
mrssuperspy mrssuperspy is offline
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We stopped Propranolol for about 2 weeks, saw regrowth and restarted. I'd guess my daughter was about 4-5 months old. It did work, about 2 hours after her 2nd dose I could see a very distinct change in color.

Good luck!
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  #4  
Old 04-08-2010, 10:56 PM
AnnA AnnA is offline
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I am getting a little anxious...my son is going off propranalol in a few weeks. He will be a year old. He has a huge internal hemangioma. I thought after the growth stage we would be ok but I am reading a lot of hemangiomas growing back after propranalol. Does anyone have any success after going off the medication?
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Old 04-13-2010, 08:43 PM
mrssuperspy mrssuperspy is offline
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Ours only started growing again because we stopped when she was so young. And, it was not our docs idea, it was ours. After 2 weeks we changed our minds, again , and put her back on.

We stopped again at 14 months, on docs recommendations and all is well. No growth.
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Old 04-14-2010, 01:54 PM
momof3inpa2009 momof3inpa2009 is offline
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they want to take my 7 month old daughter off of it (wean her off) in another month or two and I don't think they should. I think it's just going to grow back. I'm anxious to see the responses to this question as well.
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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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  #7  
Old 04-14-2010, 08:04 PM
AnnA AnnA is offline
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My son just had his MRI yesterday. He is going to be 12 months next week. They decided to keep him on the prop until 16 months and then take him off, wait 2 months and repeat the scan. His is internal so it is hard to monitor. We can't take him off and wait and see. His is pushing his trachea and extends down and on the spinal cord. I am curious to hear other cases of going off the propranalol and what will happen after.
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  #8  
Old 04-15-2010, 01:43 PM
agbaby agbaby is offline
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we decided to go back on P after stopping for about 2 months and P appears to be working again...for those out there in the same situation, it does not hurt to stop to see if H has stopped growing and if it grows back, then P will work again.
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  #9  
Old 05-12-2010, 06:48 PM
DevsMom DevsMom is offline
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When the propranolol is stopped too early or weaned too quickly there is a chance of regrowth happening. The doctor should VERY slowly wean from this drug and if at any point regrowth happens the dosage should be increased again. I myself have never heard of anybody being on it twice but I have heard people say that it didn't work because once weaned (too early or too quickly) from the propranolol regrowth occured.

Best of luck to you.
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  #10  
Old 05-18-2010, 03:54 PM
tashiestamp tashiestamp is offline
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My daughter is on the propranolol and she just turned 3 months. They said the were going to gradually take her off to see if it started to grow again while she is coming off it that way it won't grow as fast as it did when it first started growing.
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