just diagnosed with Hemangiomas at 8 wks - Page 2 - Vascular Birthmarks Foundation Forum
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  #11  
Old 11-17-2011, 07:55 PM
julia_ellin julia_ellin is offline
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Thanks again for your advice everyone. I'm happy to say that we got a referral today to see Dr. Krol at OHSU. It was very easy to get the referral from the ped derm at Kaiser. I was actually really surprised by how easy it was. I came to the appointment armed with my list of specialists and their e-mails, etc. The dermatologist actually was the one to say we should specifically see Dr. Krol. I'm sure the wait to see him is extensive, but at least we have the ball rolling!
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  #12  
Old 11-17-2011, 11:04 PM
missy missy is offline
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That's awesome!! What good news!

Nothing like that feeling of being the all-powerful, all-knowing mama-bear, is there? You rock!

Missy
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  #13  
Old 12-01-2011, 12:34 AM
nickbar nickbar is offline
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That is great news! I think Kaiser in Portland has been a leader in referring patients out of network when they know it is best for the patient. YEAH.
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  #14  
Old 12-02-2011, 02:32 AM
jilliang jilliang is offline
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Our daughter has a compound hemangioma between her eyes. The superficial aspect was the first to be noticed. She underwent two session of the pulsed-dye laser (without sedation). First session around 6 weeks and second around 10 weeks. The superficial aspect completely disappeared after the laser treatments and the deeper portion has been managed off and on w/ propranolol (had excellent results initially but saw re-growth after discontinuing at 12 months). Her reaction to the laser reminded me much of her vaccines - she was unhappy for 1-2 minutes but was easily calmed and redirected.

Best of luck. Sounds like you're very proactive. These are never easy decisions. I hated to see our daughter uncomfortable but in retrospect we're happy with the treatment course we've chosen.
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  #15  
Old 01-13-2012, 12:06 AM
julia_ellin julia_ellin is offline
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Hi everyone,

I thought I would give you an update on E's hemangioma. We went to see Dr. Krol today at OHSU. It was a long 2 month waiting list to get in to see him. E's H by her eye hasn't gotten too much bigger in width, but has raised about 1/4" or so. The one on her chest by her armpit has new superficial components to it, but still has the same blue halo around it. Dr. Krol recommend being a part of a clinical study for Timolol. Apparently the one by her eye is the perfect candidate for topical Timolol because it's superficial and still fairly small by their standards. They also recommended using timolol on the other one, because it could't hurt. So, the only thing wrong with this since it is a clinical study is that we could be given a placebo ointment, in which case it will do nothing at all. I figure why not? I think the Timolol might help the one by her eye, and if not, they're pretty confident it will just go away on it's own. The one on her chest they are a little more concerned with, as they think it still has the potential to grow pretty big, though it hasn't yet. Anyway, has anyone on here used Timolol with success?
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