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)
-   -   seeking propranolol info (http://birthmark.org/board/showthread.php?t=3287)

ruthiesmom 01-19-2009 01:50 AM

seeking propranolol info
 
My 15 week old daughter has 3 H's - two small ones that aren't of concern and don't appear to be growing and one large one that has grown rapidly since birth. The large one is on her face in between her eyebrows and the swelling now is getting closer to her right eye and blocking her full range of vision. We have seen two specialists here in Atlanta. A pediatric plastic surgeon known for laser surgery who recommends just that and, just recently, a pediatric dermatologist. They both recommend treatment as soon as possible. The derm would like to use propranolol. I have found some good info on propranolol online. I guess my biggest question/concern now is figuring out how to pick a doctor. I see many postings about people seeking out doctors in bigger cities and am not sure if that is something that I should be doing. The plastic surgeon we saw is on the Find a Physician section of this website, but the derm who would like to administer the medication is not. Is that important? Any other helpful info about propranolol would be greatly appreciated - especially first-hand info. It seems that all of the postings I've found online are for infants quite a bit older than mine. I am curious if anyone with an infant closer to my daughter's age has tried it.

Thanks in advance,
CC (Ruthie's mom)

missy 01-19-2009 11:22 AM

Quote:

The plastic surgeon we saw is on the Find a Physician section of this website, but the derm who would like to administer the medication is not. Is that important?
Just because a physician is not listed on our site, do not hesitate to seek their opinion. Physicians need to ask to be listed.... some do not know about us, some are too busy, etc.

There are a couple of people who have experiece with using this drug. It is very very new in the treatment of birthmarks, though. If the parents who have talked about it don't chime in soon, I'll go through and find their posts and email them for you.

When is he talking about doing this? When would your next appointment be?

Missy

jgoodman0814 01-19-2009 12:51 PM

i talked to a gentleman a few months ago whos grandaughter was being given the propan treatment for a vm. he said that she was doing wonderful with it. i have not heard from him in a little while, but give me your email address and i will see if he can email you with her progress.

ruthiesmom 01-19-2009 01:45 PM

Thanks Missy and Jessica.

Our next appointment with the dermatologist is next Monday - the 26th. If we decide before then, we are to call and schedule everything. Otherwise, I assume we'll schedule something next Monday. I am not sure how quick they can get us in, but they did suggest as soon as possible. I am waiting to talk to my pediatrician to see if she's willing to monitor my daughter on propranolol.

My email is cc.davis@comcast.net if you have anyone who wants to share info. Thanks again!

jgoodman0814 01-19-2009 05:50 PM

i emailed the man with your email address, hopefully he gets back with you soon. good luck!


later today i talked to him via email, hes happy to help you out any way he can. if you have not heard from him give him a shout on his email. hope this helps

trukman333@comcast.net

cel 01-20-2009 01:34 AM

I was just wondering if this treatment is only used in the growth phase?

ruthiesmom 01-20-2009 12:31 PM

Thanks Jessica - I did hear from that gentleman last night.

I think that propranolol is used in the growth phase and afterwards. Part of my question/concern is that I've only run across children who are taking it a good bit after the growth phase. My daughter is only 15 weeks and hers are still growing.

mrssuperspy 01-21-2009 02:33 PM

Hi,

I wanted to let you know that I just gave my baby her first dose this morning. She is 7 weeks old today. You can email me, thegarzafamily5@msn.com, or follow along on our family blog http://www.awindowoflife.blogspot.com

Good luck with whatever you decide. It is so hard to be in this first stage of having to find and put your trust in a new doctor!

MrsBgok 01-26-2009 06:09 AM

My daughter started propranolol at 6 weeks, she is now 5 1/2 months the propranolol stopped the growth, and almost immediately began shrinking the H. It was 5 inches by 4 inches by 2 inches at start, now it is 1 inch by 1 inch and FLAT.

ruthiesmom 01-26-2009 12:00 PM

Thanks for replying! How long did your daughter take propranolol (or is she still taking it)? Where is her H and what type is it? I would love to see before/after pictures if possible. It looks like my daughter is starting propranolol either tomorrow or Wednesday.

My email is cc.davis@comcast.net if it's easier to email info to me there. Thanks!!


All times are GMT. The time now is 07:54 PM.

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