More on the "H"

We made the trip to the dermatology folks at UCSF this afternoon. As expected, they were alarmed by the appearance of another ulcer--bigger than the first--and all doctors agreed that it would be a good idea to start on propranolol. This is a drug used on heart patients that just a couple of years ago was accidentally discovered in France to work on hemangiomas as well, when a heart patient who happened to have a hemangioma showed a dramatic improvement with the hemangimoa after starting on the drug. It is not yet approved for hemangioma treatment by the FDA, and there are multiple ongoing trials to determine correct dosing and to figure out why it works on hemangiomas, which no one understands, but doctors around the country are prescribing it and often (not always) seeing impressive results. Since we are working with one of the foremost experts on hemangiomas in the US, we feel comfortable doing something so experimental. The hope is that, if nothing else, the propranolol will stop the ulcerating of the lip and possibly reduce some of the puffiness which contributes to the ulcers.
Since low blood pressure and low blood sugar are possible side effects, we will introduce the drug gradually in the course of nine days and in the meantime will maintain our current steroid regimen. Once propranolol is established--hopefully without any problems--we will be able to resume the tapering of the steroids. In the meantime, since the ulcer is in such a vulnerable place and does not seem to be getting better with aquaphor only, we will begin treating it with a topical antibiotic, too.
Poor baby. She has had her fair share of medications in the last five months, and we look forward to the day when we do not have to dose her every few hours. She's also been a trooper about seeing doctors so often, but today was the first day when she had little tolerance for people in white coats peering into her face. Each time someone tried to approach her, she started bawling in their face, which offered them a nice view of the lip and the hemangioma. It was either new stranger anxiety, or sheer tiredness from a weekend filled with activities and not quite enough sleep for her.