Regrowth After Stopping Propranolol - Vascular Birthmarks Foundation Forum
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  #1  
Old 04-14-2014, 02:29 AM
Kfonte Kfonte is offline
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Default Regrowth After Stopping Propranolol

I'm new here so I apologize if this has been discussed several times before. My daughter was diagnosed at 2 weeks with a lower lip hemangioma, we went to a specialist and she was on Propranolol by the time she was 6 weeks old - 3 times a day for the past year. She turned a year on March 2 and you couldn't even see the hemangioma on her lip. It was amazing. March 4 marked her last day on Propranolol and our doctor explained the potential for regrowth but we all thought it was unlikely since we such positive results. Unfortunately, after only a month we can see a change in color and it is once again bubbling up. Instead of putting my daughter back on propranolol, she was prescribed Timolol twice a day for the next 11 weeks.

I hate to sound like a glass half empty person but with it being just a liquid that we put on her lip, it doesn't seem like it would be that effective. My daughter literally licks her lips the minute we rub it on.

Has anyone had success with Timolol after stopping Propranolol? Thank you for any advice - I appreciate it!
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Old 04-14-2014, 04:18 AM
smurph smurph is offline
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Hi there! I'm not sure if this will help or not because my daughter did not take either of those medications (they weren't really used at the time of her treatment 9 years ago). At that time they used oral steroids mostly which she was on for almost a year. When she came off of it, she did experience some rebound growth. I remember her doctor saying that at times about 10% regrowth may happen. Hers did grow back a bit, but then it stabilized and started slowly involuting on its own. I think the scary thing for me was that it had been so controlled while she was on the meds and then to all of a sudden see it growing again freaked me out! I found the unknown to be difficult, but as soon as I saw that it was slowly fading again, I knew we had pretty much turned the corner and were on our way. Like I said, I'm not sure what happens in terms of regrowth with propanolol so hopefully others will chime in here with their experiences. I think what your doctor is prescribing seems reasonable to help her get over this last hump???? If it continues to grow, feel free to email Dr. Levitin here on the Ask the Experts panel and he may be able to give you his opinion-which will be much more informed than mine!!! Good luck! Hang in there! You are almost there!
Shannon
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Old 04-14-2014, 04:20 AM
Kfonte Kfonte is offline
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Thank you do much! I hate not knowing and being so out of control!
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Old 04-17-2014, 02:18 PM
momof3inpa2009 momof3inpa2009 is offline
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No we did not have success with timolol after propanolol. It seemed to help a little bit but then we just quit using it. We are having surgery here in less than two weeks.
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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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Old 04-18-2014, 01:47 AM
Kfonte Kfonte is offline
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Thanks for your honesty! I was just looking at your blog and reading about your journey. Good luck - you guys will be in my thoughts. I look forward to reading how the surgery went.
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Old 04-18-2014, 02:08 AM
momof3inpa2009 momof3inpa2009 is offline
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Awe thank you so much!!!!!
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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 04-19-2014, 12:27 AM
smurph smurph is offline
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Thanks for sharing your experiences with propanolol. I am sure the doctors must be looking at the results of the treatments as time moves on to see what it most effective. I think it is important to parents to be a part of the this process, so sharing your feedback, concerns is always a good thing. Good luck!
shannon
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