Vascular Birthmarks Foundation Forum - View Single Post - How to consider treatment options
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Old 05-02-2009, 12:04 AM
megs1082 megs1082 is offline
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Join Date: Feb 2009
Posts: 19
Default Propranolol

I would also suggest the propranolol. Having used both oral steroids and propranolol, the propranolol is a better option in my opinion. I say that with the stipulation that there be very careful monitoring. My daughter has 4 hemangiomas - 1 superficial, 1 compound and 2 deep. They have all shown remarkable improvement with 1 1/2 months of propranolol treatment. The steroid treatment we started at 3 weeks of age barely slowed their growth. I'm now confident that my daughter will be able to grow up without disfigurement! Her main area of concern was a rapidly growing parotid (deep)hemangioma. It is now barely noticable!

A very nice thing about the propranolol, aside from the lack of scary side effects that the steroids have, is the fact that a missed dose is not the end of the world. 8 week baby can = spitting out a large portion of the medicine/potentially spitting it up just 10 minutes later and you don't know how much of the meds actually got in or stayed in. It is concerning to miss a dose of steroids. It has been explained to me, that if it isn't for heart related treatment, missing a dose of Propranolol is not that big of a deal.

We are working on weaning our daughter off the steroids - it's a long process as we've been at it for over a month and still have 1 1/2 - 2 months to go. I wish our ped. derm. hadn't been reluctant to start the propranolol and that we had never started the steroids.

The Propranolol works especially well on deep h's. It has also done a great job fading the superficial portions of our daughter's h's, but it took a bit longer for those changes to start taking place. If you are going to do Propranolol, I'd definitely hold off on the laser as it might not be necessary at all!

I wish you peace in whatever decision you come to! Making these decisions for our children is so difficult!

If you'd like, I can e-mail you directly with pictures of how well it has worked for us!

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