How long can be the treatment with propranolol - Vascular Birthmarks Foundation Forum
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  #1  
Old 03-25-2014, 03:10 PM
Sonia Stoyanova Sonia Stoyanova is offline
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Default How long can be the treatment with propranolol

My daughter has segmental hemangioma on his left hand. We started to take propranolol at 3 monts and now she is 13 monts. My question is the following, how long is the effective treatment with propranolo, is it 9 month or 12?
Please can you give me more information how long it can be this treatment in order to be sure that the hemangioma will not grow again.
Thank you vety much.
Sonia
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  #2  
Old 03-25-2014, 03:27 PM
missy missy is offline
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Hi and welcome!

Different children and different birthmarks are going to need different treatment lengths, so I don't think this is something anyone else can tell you. I've known of children who were treated for a few months and I've known children who were taking the drug for a couple of years.

I've also known of children who were weaned off the drug, only to have to restart because their birthmark began to grow again.

Missy
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  #3  
Old 04-17-2014, 03:17 PM
momof3inpa2009 momof3inpa2009 is offline
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I will have to look at my blog to see the exact age of when we weaned my daughter off of it but I think she was into a year old or so if not older but do not quote me on that. You can read my blog if you wish to. Good luck!
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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 04-17-2014, 03:22 PM
momof3inpa2009 momof3inpa2009 is offline
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Correction: I just saw in my signauture that my daughter was 19 months old and still on propanolol
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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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  #5  
Old 05-06-2014, 10:41 AM
Sonia Stoyanova Sonia Stoyanova is offline
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Hello Thank you for your replies.
I have one more question, do you know what kind of cream can be use when the hemangioma starts to itch the kid or start to peel. I use a cream which is with corticosteroids and when I put it for two or free days the symptoms disappeared and after 10 days they arrives again.
I`m wondering why after the cream hemangioma has almost white skin and when I do not put this cream starts to become red.
Thank you in advance if you can suggest me some other creams which I can use.
Regards,Sonia
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  #6  
Old 05-07-2014, 02:39 AM
smurph smurph is offline
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Our doctor always recommended Aquaphor to put on my daughter's hemangioma. I'm not sure if that would be helpful to you. Good luck!
Shannon
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  #7  
Old 05-07-2014, 09:27 AM
Sonia Stoyanova Sonia Stoyanova is offline
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Hello Shannon, Thank you very much for your answer, I have started to read the blog and I see that your daughter is wonderful, hopefully at the moment she des not have a trace from the hemangioma. I also cry very often because here in our country there is no information about such things but we have a really good doctor who treats my baby with proprapronol and the result is very good.
As you have more experience than me, can you please tell me if the hemangiomas treated with this drug has the same life cycle, what I mean even it is treated is there is a possibility to shrink with time or not? My baby has two, one superficial on the hand and one deep in the back, but the one in the back has disappeared after 6 months with propranolol. The one on the hand is still there but now has pink colored. I`m wondering when we stopped the drug if it will shrink or not even it is treated already? Thank you in advance for your reply. Sonia
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  #8  
Old 05-08-2014, 03:50 AM
smurph smurph is offline
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Hi Sonia. I'm not sure. My daughter was treated with a different drug-prednisolone which was used when we were going through this 9 years ago. I'm not sure if propanolol works the same way. But basically it kept her hemangioma under control when she was on it and then when she came off it grew back a bit (at about age 1)....at that point it started to fade and went through the normal process of involution (fading) that hemangiomas typically follow. Now, my other daughter had a pretty large, bright red hemangioma on her hand/wrist and we did not treat it at all. It TOTALLY went away on its own. So my guess is that with the propanolol the same thing will eventually happen...the drugs maybe speeds up the fading process at the beginning or "hold it back" from growing like crazy during the growth phase and then after that, it goes through the normal process of involution. That's my understanding. Here's some pictures of my daughter's hand hemangioma. I'm not sure if it's similar to your daughter's.

https://www.facebook.com/shannon.hoh...02383&t ype=3

So like I said, I'm not sure if things are different with propanolol...I think they are still figuring that out. But hopefully it will fade over time either way. It's so hard to be patient, but I have seen it happen 3 times (3 our of my 4 daughters have had hemangiomas and they are now all gone!)

Shannon
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  #9  
Old 05-15-2014, 02:54 PM
Kfonte Kfonte is offline
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Hi!

My daughter started propranolol for her lower lip H when she was 7 weeks old and was on it until she turned a year. She was taken off but has had considerable rebound growth. She was put on Timolol which did not do anything for her so last Friday she was put back on propranolol. Our doctor told me that she can use it for a total of 15 months. Because we had a 2 month break we can start it back up again but only for 3 months.

Your provider would give you the best idea of what they think is best for your little one. But, that's what ours advised us.

Good luck!
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