Vascular Birthmarks Foundation Forum

Vascular Birthmarks Foundation Forum (http://birthmark.org/board/index.php)
-   Help and Resources for Hemangiomas (http://birthmark.org/board/forumdisplay.php?f=9)
-   -   How to consider treatment options (http://birthmark.org/board/showthread.php?t=3416)

ttn 05-01-2009 06:05 PM

How to consider treatment options
 
Our 8 week daughter has a hemangioma on her eyelid. The plastic surgeon, with expertise in treating people with hemangiomas, took one quick look at her , said she had a superficial hemangioma on her eyelid & recommended PDL (laser tx). No change after 1 PDL. We decided to consult a pediatric dermatologist 2 week later. The pediatric dermatologist (much more helpful & did full body check) also has experience with hemangiomas and she said the hemangioma was superficial and deep. Her recommendation was to hold off on the PDL now (it wouldn't help with the deep component) and to consider propranolol or steroids. So we are not sure what to do regarding the PDL. Should we hold off the PDL until we try propranolol? PDL is expensive and we are not sure if we should wait to see how she responds to medication first. (Also, I have already emailed the experts. Answers ranged from excision (which the 2 we consulted said not now because of her size & age) to laser to propranolol.

missy 05-01-2009 10:01 PM

My OPINION: if you have a doctor willing and experienced to try propanolol, I would do that first. Most of the cases that I've heard of treated that way showed remarkable results.

Missy

megs1082 05-01-2009 11:04 PM

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!

Megan

khubbard 05-02-2009 01:50 AM

I too vote for propranolol hands down. My 9 month old daughter has a compound hemangioma on her face directly under her right eye. We first did steroids for 5 months starting when she was 8 weeks old (and endured horrible side effects), weaned off the steroids and had rebound growth, so started the propranolol. NO side effects at all and it stopped the growth and has caused it to shrink and fade. If it helps, my daughter's pediatric dermatologist, who has many years of experience treating hemangiomas at a very highly respected medical center, told us the same thing about laser treatments for her. He said they would not be effective for her due to the compound nature of her H and that laser only penetrates the first layer of skin. Our plan is to complete propranolol treatment (we are weaning her off right now), then wait until she's 1 and 1/2 or 2 to consider laser treatment once the compound portion has flattened out. The laser can treat any leftover redness then.


All times are GMT. The time now is 08:15 AM.

Powered by vBulletin® Version 3.6.5
Copyright ©2000 - 2014, Jelsoft Enterprises Ltd.