Hers appeared when she was about 5 weeks old... after going from ped to dermatologist etc.. it wasnt until she was about 10 weeks old that we finally got on the right track. Since hers was on her lower eye lid.. we had to go to see a ped ophthalmologist first to assess what was happening with her vision. From there we were referred to a pediatric dermatologist and she worked with a pediatric cardiologist for patients with Hemangioma's. So we had a whole team really. The cardiologist did a full cardiac work up, EKG, cardiac ultrasound etc the week before we started her on the medication.
We started with propranolol the day she turned 3 months old. We had to go the hospital that the cardiologist worked out of to be an "inpatient" for the day..we were told we would be observed over 6 hours. Once we got settled in, they did a heel prick to test blood sugars, blood pressure and heart rate. She was given her first dose of propranolol there. Every hour they took her blood pressure and heart rate and then she had heel pricks for blood sugar at 3 hrs and 6 hours.
The cardiologist came to see us at 6 hours.. said she was good to go.. and sent us on our way. She was to have the medicine 2x a day-- we did 6am and 6pm .. i just set the timer on my phone. I wanna say 1.6ml 2x a day but I would have to look that up to be sure... I dont remember any more!
In the beginning we say the cardiologist, and dermatologist monthly to check her progress and her reaction to the medication. We saw the ophthalmologist every 3 months. After she turned 6 months.. we saw the cardiologist and dermatologist every other month.. the opthamologist we saw every 6 months or so. She started the weaning process so that she was off the medication by 13 months or so. First we did once a day.. then we did once every other day and then we were done. We have not seen any rebounding. We now have a yearly follow up with the dermatologist, the cardiologist and the ophthalmologist.
Please let me know if you have any other questions. I would be happy to help.. I can remember how all consuming this can be and how much you just want this to be behind you :-) hang in there!