Timolol - your experience? And mine
Hi everyone, this is my first time posting but I've been lurking here for a while. My daughter, who is 5 months, has a compound hemangioma on her scalp, right next to her soft spot. She was seen at the ped derm dept at Johns Hopkins in Baltimore about a month ago. They didn't recommend any treatment for her but to wait and see. At first I was fine with that -- I was mainly relieved to have been told not to worry about the H growing down through her soft spot into her brain! But of course I wanted more information, and that turned into spending the last month searching online for different treatment options for her. Eventually I read about Timolol, the ophthalmic beta blocker gel that's applied topically to the hemangioma, and decided I wanted to try that.
Has anyone here used Timolol? I searched the board and have seen a few mentions of it, but I'm interested in hearing from anyone who's had any experience with it.
I asked a bunch of questions of the nurse at Johns Hopkins and here's what she told me, for anyone who's interested. They've seen limited success with Timolol, but it's often been used on particularly difficult cases so that's not necessarily predictive. They've never observed any adverse affects in patients taking it. A hemangioma that's still in its growth phase is least likely to be successfully treated with Timolol (which is contrary to some of what I've read online, but there's so much conflicting info out there that I'm not surprised). It works slowly and can take weeks or even months before there's noticeable improvement. It works by cutting off blood flow to the vessels on the surface of the H, decreasing its visibility.
I was told to apply the gel to my daughter's H three times a day. Last night was the first time we used it. My daughter is normally a champion sleeper, and last night she was up most of the night, fussing and carrying on. She had a stuffed-up nose, which always interrupts her sleep, but last night she had a truly unusual amount of distress. Maybe it was because she was getting a cold, maybe it was because she also has a touch of diaper rash... but I know that "night terrors" are a side effort of Propranolol, which is also a beta blocker, so I can't help but wonder if that was part of what was bothering her. We'll see how tonight goes.
I'm attaching some pics I took of her H in the past week or so, before starting the Timolol, and I'll come back here to update its progress (knock on wood!). I'm hoping to hear back from some other people who've tried Timolol, but I also hope this post is helpful to anyone else who might be thinking about using it, since this forum has been so helpful to me over the past few months. I'd be happy to answer any questions anyone might have about why we chose to try Timolol, or whatever else.
Wish us luck!