Propranolol for Hemangioma - Page 2 - Vascular Birthmarks Foundation Forum
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  #11  
Old 09-24-2010, 09:12 PM
annina annina is offline
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Hi!
Here is an update of my daughter's segmental Hemangioma with some pictures. We started giving her Propranolol on April 2010 when she was 2 months old and she has not had any side effects. We are giving her 2mg/Kg/day and checking her blood pressure and heart rate once a week.
Over time we have seen dramatic results. However the H is still there and might affect her eye growth. Right now we are patching her good eye 30 minutes a day to prevent a "lazy eye".
I hope this helps!
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  #12  
Old 09-25-2010, 12:59 PM
jacobs_mom jacobs_mom is offline
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I will be sending some photos of the hemangioma on my son's nose to Missy to see if she can upload them.

Photo 1 was taken when he was 4 days old. The light pink mark was present at birth.

Photo 2 was taken when he was 1 month old. The hemangioma had gotten bright red by the time he was 2 weeks old.

Photo 3 was taken when he was 3 months old. When I took this photo, he had been on steroids for about a month. It was still bright red but for that first month that he was on steroids, the steroids seemed to control the hemangioma's growth. But then, it started to get bumpy. I emailed this photo to his doctor and he was started on Propranolol a few days later.

Photo 5 was taken a couple weeks ago. He is 5 months old now. It's hard to tell from the photo, but the hemangioma is lighter in color and there are some flesh colored spots. Also, the bumpiness is gone and it's pretty smooth and flat.

I will update with more pictures in the future to show how he's doing on Propranolol.
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  #13  
Old 09-25-2010, 03:32 PM
missy missy is offline
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Default pics!

Here ya go!
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  #14  
Old 09-25-2010, 04:55 PM
momof3inpa2009 momof3inpa2009 is offline
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Kelly--I am liking the results of propanolol too. I see your son must have started around 8 months? My daughter started around 5 months and she is now almost 13 months. I was kind of bummed when we started to ween her off and her hemangioma went back up. Any talk of when you will be weening your son off? Would love to talk with you more on this.
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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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  #15  
Old 09-29-2010, 05:55 AM
RsMom RsMom is offline
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My daughter has the same hemangioma! I'll send Missy some pictures to post. She started propranolol at 3 months and is now 5 1/2 months. The results have been incredible! We tried topicals with very little improvement before starting propranolol. Her dermatologist said to expect to have her on propranolol for at least another few months.
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  #16  
Old 09-29-2010, 12:02 PM
missy missy is offline
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Default pics

Here ya go!

She's a cutie-patootie!

Missy
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  #17  
Old 09-29-2010, 03:21 PM
momof3inpa2009 momof3inpa2009 is offline
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Quote:
Originally Posted by annina View Post
Hi!
Here is an update of my daughter's segmental Hemangioma with some pictures. We started giving her Propranolol on April 2010 when she was 2 months old and she has not had any side effects. We are giving her 2mg/Kg/day and checking her blood pressure and heart rate once a week.
Over time we have seen dramatic results. However the H is still there and might affect her eye growth. Right now we are patching her good eye 30 minutes a day to prevent a "lazy eye".
I hope this helps!
does your daughter have a hemangioma above her eye on eyebrow too? thats where my daughter's is. i've never seen anyone else with one like hers' and where it is at. your little girl is goregous by the way. looks great!
__________________
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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  #18  
Old 09-29-2010, 06:16 PM
jacobs_mom jacobs_mom is offline
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Quote:
Originally Posted by RsMom View Post
My daughter has the same hemangioma! I'll send Missy some pictures to post. She started propranolol at 3 months and is now 5 1/2 months. The results have been incredible! We tried topicals with very little improvement before starting propranolol. Her dermatologist said to expect to have her on propranolol for at least another few months.
It looks like she's doing great on Propranolol! My son has been on it for about the same amount of time as your daughter. It's controlled the hemangioma from growing, but the results haven't been quite as dramatic as what I see with your daughter. Still, I'm pleased with how Propranolol has been helping my son

He's currently on 1.2 ml twice/day. How much does your daughter take? I'm wondering if being on more Propranolol would help my son's hemangioma even more.
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  #19  
Old 09-29-2010, 08:22 PM
RsMom RsMom is offline
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She takes 1 ml 3 times a day. She weighs about 14-15 pounds. The dose is periodically adjusted according to her weight. It has been about a month since our last derm visit so it may go up a bit when we go back next week. I feel grateful that propranolol is an option for our babies now!
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  #20  
Old 09-29-2010, 08:52 PM
carii carii is offline
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Thanks Kelly and JacobsMom! Our appt with Dr. Frieden is Monday Oct 4 so I will let you all know how it goes. I'm sending some pics to that email address as we speak.

It's so nice to have this forum, people just do not seem to understand these birthmarks. I keep hearing about how common they are, but people really do stare, point and ask what it is. It's so strange to me--I just don't think I ever would have done that!
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