Hi...I wanted to update you. Our daughter was admitted to UCSF Children's Hospital on Saturday. While there, she was given a low dose of propranolol .75 mg for 24 hours. She did well on that dose. Her B/P did hover in the lows but it never went too low. Her blood sugars were good, anywhere from 90-104. After the 24 hours, they gave her 1.5 mg. Last dose was 2.25 mg, which is what she got discharged with. She had an MRI with contrast, came back normal. Had cardiac U/S, came back normal. And had an eye exam by an opthomologist, she was diagnosed with Morning Glory and was also diagnosed with PHACE (since she has the hemangiomas and eye abnormality.) She's been on the medication for 4 days and we already see some lightening oh her facial marks. I'll post a pic soon.
Thank you all for such a wonderful site.