New here, 1 mo. old baby w large Hemangioma - Page 3 - Vascular Birthmarks Foundation Forum
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  #21  
Old 05-07-2011, 02:14 AM
twinmommy twinmommy is offline
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Thanks to my diligent pediatrician we got pushed thru for out of network to have Ruby go to Children's Los Angeles... also the derm I saw this week spent her day off researching timolol! How cool is that? So we will see the specialists at CHLA in the next week and eye doc on Monday.

I am so greatful for finding this website, I may not have been this aggressive had I not read all your stories.
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  #22  
Old 05-07-2011, 11:01 AM
missy missy is offline
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YAY!! I'm so glad you're pleased!

Keep us posted!

Missy
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  #23  
Old 05-07-2011, 01:23 PM
burtongrl burtongrl is offline
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Hi I just wanted to tell you, my son was 4 months when he started propranolol, I was completely nervous and didn't want to do it. He was the youngest to be treated at the place I went to, which really made me hesitant and nervous about everything. My son's hemangioma luckily wasn't a fast growing one, so I really didn't want to do the whole propranolol and hospital stay, but the pediatric opthamologist said his vision could be affected and it was highly recommended. Everything went well and we are also applying a topical timolol along with propranolol. He's been on it a whole month and his hemangioma is almost gone
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  #24  
Old 05-12-2011, 09:11 PM
twinmommy twinmommy is offline
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We got in to CHLA, they were willing to accept the HMO price and Ruby saw the specialist (director) yesterday. They are doing something unique there, they compound their own medicine like propranolol (I wish I could remember the name of it, but I can't) without the risk to heart and airway.... this way they can use it on small premies!

The good news is, she starts immediately, the bad news is, the med has a shelf life of 14 days so we have to drive to downtown LA every 2 weeks. Worse things could happen so we'll count it as an adventure I guess.

Her right eye is opening up more. Opth. gave us eye patches she has to wear over here good eye to force the bad to open (man does that frustrate her!!).

If it wasn't for this forum I wouldn't have made contact with the specialist who put the fire under my butt to get her seen immediately. Thank you all!!!
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  #25  
Old 05-12-2011, 09:12 PM
twinmommy twinmommy is offline
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Quote:
Originally Posted by burtongrl View Post
He's been on it a whole month and his hemangioma is almost gone
This is amazing! and great to know
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  #26  
Old 05-13-2011, 12:00 PM
mcdonaldmultiples mcdonaldmultiples is offline
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Default 14 month old on prop ..new member

Hi,
@twinmommy.. I believe I Posted some comments on Twiniversity:-) My son has a large one on his chest and he is on prop.. I am loving this forum!!

However, I feel like I may not have been proactive enough...what is the topical you are putting on ? My ped derm never has said anything about it:-(

Thanks
Stacey
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  #27  
Old 05-13-2011, 03:41 PM
nickbar nickbar is offline
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Thank you for the update... and please do continue to let us know how it is going.
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  #28  
Old 05-13-2011, 06:23 PM
twinmommy twinmommy is offline
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Quote:
Originally Posted by mcdonaldmultiples View Post
However, I feel like I may not have been proactive enough...what is the topical you are putting on ? My ped derm never has said anything about it
The derm they sent us to last week had not a clue what to do, so she googled and saw some docs use timolol (eye drops) as a topical. She took the "it couldn't hurt" approach and prescribed it.

When I saw the specialist at CHLA he said that timolol would only be 'superficial' and wouldn't stop the growth much. So I don't think you should worry. In research it seems some move to timolol AFTER they've reduced or stopped it with propranolol.
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  #29  
Old 05-22-2011, 06:11 PM
twinmommy twinmommy is offline
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Ruby passed her EKG and other testing and was approved for med. They do not use propranolol, they are going to use acebutolol . She is going to be part of a study.

Unfortunately while I was burping her this morning she bumped my chin with her H. and it started to bleed badly. My poor husband looked up and saw blood on my face and thought that she had spit up blood - so you can imagine he scared me silly. I am so glad she is starting treatment this coming week.
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