Well I was just coming in to update again...we are not having any luck with weaning....Lexi is back on one dose again. Her hemangioma is getting bigger again. Phoenixihc...I would love to talk with you more....It looks like we are in the same boat with our girls ages and being on propanolol.
Deep hemangioma on left eyebrow towards nose
Started propanolol Feb. 11th, 2010
Off of propanolol aprox. June 2011
Takes 3 doses per day at 1.3ml
2nd Weaning of prop. not a success back on it March 22. Only one dose of 1.3ml now Baby girl is 19 months old Did Timolol gel for awhile, stopped, & back on - 4 years old. Off of Timolol -doesn't seem to be doing anything. At this point we have surgery scheduled for April