It had been a year since we last saw Dr. Dominey. Chloë has grown up considerably since last October, but her hemangioma is mostly unchanged. I had hoped that we would see some fading or shrinking over this last year, but we really haven't. I'm just grateful that it hasn't grown.
2011: 16 months old. No treatments since we ended the Timolol in February of 2011.
2012: 2 1/2 years old. Still no treatment since February 2011.
Since the hemangioma is in a "good" location behind her ear, we really don't have to be aggressive in treatment right now. We can just leave it alone and not do anything until later, if we choose. Dr. Dominey talked about the presence of a hemangioma having some psycho-social affects on Chloë , especially a few years down the road. I know that as she gets a little older and becomes more aware of the occasional stare, and more self-conscious of strangers' questions, I might not be content to sit back and do nothing. I don't want her to be embarrassed to wear her hair up or in a ponytail.
So we talked about the possibility of a small surgery in a few years. A surgeon would cut out as much of the hemangioma as he could, and since her right ear has been pushed forward a bit, he could remove a little extra flesh (and maybe cartilage) and "pin" her ear just a little to match the left side. Since hemangiomas are highly vascular, sometimes skin grafts are required for things to heal properly. But because of the extra skin and tissue surrounding Chloë's hemangioma, Dr. Dominey thought that the edges of the skin would be able to be sutured together, and we wouldn't have to worry about any skin grafts.
Then I asked Dr. Dominey about propranolol. She laughed a little, and said "I knew you were going to ask me about that." She said there hasn't been a lot of new research over the last year, but there are more stories of success of shrinking hemangiomas in infants or children taking oral propranolol. I asked Dr. Dominey if she had seen anything in her literature to suggest that there might be a difference in effectiveness depending on the age of the child. She said she didn't think so, but that there were certainly more cases of infants using propranolol than toddlers or older children.
Propranolol is a medication approved to treat hypertension, and I used to give it to patients to lower their blood pressure and heart rate. So we weren't very keen on giving it to Chloë when she was an infant. It just seemed too scary. But now that she is a little older, I thought I might be okay with the idea of it, as long as we could closely monitor her heart rate and blood pressure. So we talked about setting up an appointment with her primary local doctor, and having an initial baseline check of her heart rate, blood pressure, as well as her blood sugar. Then we would start her on 5mg on Propranolol three times a day, and re-check those vital signs shortly after her initial dose. Then every so often (a week maybe?), we would increase her dose by 5mg, and re-check her vitals. So what were considering was: close monitoring of her vital signs initially and every time we increased her dose, and increasing the dose from 5mg three times a day, to 10mg three times a day, then to 15mg three times a day, to a total of 20mg three times a day.
Then we realized something. Even if the hemangioma responds to the propranolol and shrinks, the cartilage and skin of her ear aren't going to shrink. So we'd probably consider a small surgery to "pin" her ear so it matches her left ear. And if we're likely planning on going to the trouble of a cosmetic surgery, why not just remove the hemangioma at the same time, and not worry about all of the monitoring and potential side effects of a strong medication.
So that's what we decided: to do nothing. Even though the hemangioma hasn't really started to shrink, there's still some hope that it might, at some point in the next few years. So we'll keep praying and watching it, and see what the next few years bring.
For the few of you that found this blog post by searching for hemangiomas, timolol, beta blockers, and before and after photos, you can see my older blog posts (with more information and statistics) on this subject tagged under the hemangioma label.