5 week old with forehead hemangiona-please help! - Page 3 - Vascular Birthmarks Foundation Forum
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  #21  
Old 02-03-2011, 01:49 AM
nickbar nickbar is offline
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please let me know if you need any help. Dr. L is very good at answering emails, but he gets a lot of them... so keep trying him or let me know and I'll make sure your email hits "the top of the inbox"
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  #22  
Old 02-08-2011, 06:46 PM
kate kate is offline
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Sophie has started propranolol and tolerating it well no probs. In the first few days as expected we saw a huge difference, the mark had flattened and faded. She is only on 1mg per kilo but I think it will be increased to 1.5 next week. I will keep you updated on the results!
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  #23  
Old 02-24-2011, 07:50 AM
catherine catherine is offline
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Hi Kate
Our 4 month old baby girl is also going to be starting treatment with Prof Tan for an ulcerating haemangioma on her chin. We are going on the captopril trial, but don't think there are too many others on it. Hope all goes well with the propanolol - my neice has had it and her birthmark on her nose has improved hugely. Professor Tan is amazing and it sounds as though we are in great hands. Bit of a worry that your paediatrician was going to prescribe you propanolol though without monitoring in hospital, as this is a medication used to slow the heart rate and decrease blood pressure.

Last edited by catherine : 02-24-2011 at 07:53 AM.
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  #24  
Old 03-07-2011, 07:45 PM
tessaemay1981 tessaemay1981 is offline
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Your daughter looks fantastic! When did you start her on the propranolol? We just started our son on propranolol at 3 months. I'm hoping to see results like your baby's.
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  #25  
Old 03-09-2011, 12:57 PM
momof3inpa2009 momof3inpa2009 is offline
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Hey phoenixihc - your daughter's deep hemangioma under her eye is there just some extra skin there now? My daughter has one above her eye on eyebrow and today is actually day 3 of no propanolol. We have weaned her off slowly. She is 18 months btw. Anyway my daughter's hemangioma looks great but I see some extra skin there. Sometimes I think her hemangioma is "back" and other times I think it's just extra skin.

Kate: There's things that can be done so that it does not get larger. Do your own research on it and get different opinions. It's frustrating at first but so worth it!!!! 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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  #26  
Old 03-18-2011, 11:55 AM
phoenixihc phoenixihc is offline
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momof3inpa - Yes same with our daughter. Not very much extra and on most days I don't notivce it but sometimes, like you, I think it's coming back but then the next day I don't We're weening her off as well and she also now 18 months. I suppose as they grow the skin will stretch and the extra skin would flatten out.
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  #27  
Old 03-22-2011, 06:21 PM
momof3inpa2009 momof3inpa2009 is offline
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Well I was just coming in to update again...we are not having any luck with weaning....Lexi is back on one dose again. Her hemangioma is getting bigger again. Phoenixihc...I would love to talk with you more....It looks like we are in the same boat with our girls ages and being 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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  #28  
Old 03-22-2011, 08:54 PM
phoenixihc phoenixihc is offline
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Momof3in pa... I would love that. Where can I email you?
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  #29  
Old 03-22-2011, 11:07 PM
momof3inpa2009 momof3inpa2009 is offline
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I will try to PM you my email
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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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  #30  
Old 05-02-2011, 05:58 PM
slcraig1 slcraig1 is offline
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Hi,
My daughter also had a forehead hemangioma that started off as a pale red mark. it grew very rapidly to a big, bright red, puffy hemangioma with a bump "underneath" also. I ended up opting for surgical removal at age 18 months; but if I had to do it all over again, I would have taken her to specialist ASAP after birth and tried some of the drugs out there that are able to shrink the hemangioma and/or stop the growth process -- in the hopes that I might have been able to avoid surgery.

In case it's helpful to you, here's a link to pictures that document the growth and healing of my daughter's hemangioma.

Our pediatrician AND dermatologist recommended a "wait-and-see" approach; but like I said, I wish now that I had tried the drugs while the hemangioma was still very small.

it's also important to note that everyone's situation is different though! Bottom line is that it's tough to make the decision. I know I would have also been scared to put drugs into my daughter's body. No decision is stress-free, unfortunately.

Hope this helps,
Sally

here's the link:
http://www.flickr.com/photos/6246854...7626631303066/
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