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-   Help and Resources for Hemangiomas (http://birthmark.org/board/forumdisplay.php?f=9)
-   -   went to boston childrens hospital.... (http://birthmark.org/board/showthread.php?t=5359)

emilygallese 06-12-2011 03:59 AM

went to boston childrens hospital....
 
We recently took our 3 1/2 month old to boston childrens hospital after joining this site (which has been so helpful) and saw dr. greene who was really great and started our daughter on prednisone (sp?) already only a week later her H. looks less "angry" if you will. Any parents that have used steroids to inihibit growth that would comment on outcome would be great. dr greene did say she may need some surgery in the future to restore proper contour of her forehead, but we would just wait and see. I will keep everyone updated on her tx and outcome, thanks to the parents that do the same, its so helpful. xoxoxox's to all the beautiful babies waiting to rid of their H.'s.

missy 06-12-2011 12:22 PM

So glad you got to go to Boston Children's. They are wonderful there, from what I've heard.

Keep us posted. Other parents will come by soon and let you know how their babies did on steroids.

Missy

smurph 06-13-2011 05:01 AM

Hi!

Where are you from? We live in NH and we have been going to Boston Childrens since my daughter was born (6 years ago.) She has a lip hemangioma. She sees Dr. Mulliken there. She did steroids from about 10 week of age up until about 10 months or so. She did very well on the meds with minimal side effects. It really stunted the growth of the hemangioma and helped with the ulceration she had. I don't think propanolol was really offered back then (another drug used nowadays). My daughter also had surgery last year and just had laser this year. One of my other daughters also has a hemangioma on her hand/wrist and she also went to Childrens. She has had no treatment and it's involuting on its own. Everyone at Childrens has been wonderful! We have been so happy. Here's some pics of my daughters' journeys if you would like to see:

http://www.facebook.com/media/set/?s...l=a18fd285 c7

http://www.facebook.com/media/set/?s...l=1b4cbdd4 36

Let me know if you have any questions!
Shannon

nickbar 06-13-2011 05:20 PM

My son was on steroids for about 12 weeks. He did very well considering side effects. After being on steroids he had laser procedures and that changed the need for any corrective surgery. Good luck and keep us updated.

emilygallese 06-16-2011 02:56 AM

Thanks Shannon, your story is very helpful and reasurring too, after seeing the pictures of your beautiful daughter I feel at ease. So far my maddy is doing well with the steroid and I think the H. has definately stopped growing, whew! They are wonderful at boston, I originally called dr mulliken and he referred me to dr greene. Thanks for chiming in, I appreciate the support and comments.

emilygallese 06-16-2011 03:01 AM

shannon- oh, and we live in a small town about 40 min east of albany ny, right on the vt/ny/ma border. coincidently, I did live in both keene and manchester nh when i was younger.

missy 06-16-2011 12:22 PM

Glad to hear Maddy is doing well! Keep us posted!

Missy

nickbar 06-16-2011 11:33 PM

Glad to hear the growth is under control. Keep us posted.


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