Wednesday, February 16, 2011

Hemangioma Follow Up

(As I log into my blog and begin to type, I notice that my daughter, on the floor, is moaning and grunting with delight and sucking on her fist like she's found a piece of chocolate. I think she's just eating leaf crumbs. Maybe I'll sweep later.)

So yesterday, we made the treacherous drive to Spokane and back for Chloë's dermatology follow up appointment. We haven't had more than a dusting of snow in over a month, so of course I woke up to half a foot of snow on the ground. I called the office to re-schedule, but it would be weeks until we could get in, and no telling what the weather would be like then, anyway. So we made the slow, snowy drive there and back without even sliding off the road.

It has been four months since our initial visit with Dr. Dominey. To summarize, we saw her in October, discussed treatment options, and decided to go with twice-a-day topical Timolol. We followed up in November, December, and then yesterday. Chloë's hemangioma seemed to respond pretty well to the treatment; the slow growing stopped, the color faded from a bright red to more of an ashy red, and it doesn't seem quite as "tall" or "full."

Yesterday, we talked about how things were going. Yes, I've been pleased with how the hemangioma has responded to the treatment. Yes, she's eating just great. Actually, she has been having some trouble sleeping. In the last couple of months, Chloë occasionally has odd episodes in the middle of the night: not waking up, crying and really almost screaming, thrashing around, and having heavy and rapid breathing. She is very difficult to console, especially since she won't wake up, but holding her seems to calm her down after a while. (We have done a little research and think it might be "night terrors." When the brain is supposed to be turned off and getting deep sleep during the 4th stage of sleep, it seems that instead there is something stimulating it, causing unnatural activity. And I guess this can cause a terror-like response.) So I mentioned this to Dr. Dominey, and she said that Beta Blockers (which is what Timolol is) have been known to cause sleep disturbances. She said that the Timolol has probably reached the limit of it's benefit, and that our plan should be to stop treatment and see how things go. If the hemangioma seems to start growing or getting darker, we'll discuss re-starting the treatment. But since there is the possibility that the Timolol could be correlated to the poor sleep, she thought we should see if things don't improve.

Dr. Dominey also mentioned that oral Propanolol (also a Beta Blocker) has been successful in actually reducing and "getting rid of" hemangiomas. Timolol seems to help stop growth, but Propanolol seems to actually shrink it. When she first mentioned this option in October, we were very hesitant to try it because of the systemic effects it can have: slowed heart rate, lower blood pressures, and even lower blood sugars. But she said with careful monitoring, babies can be just fine and the hemangioma will respond well. I said I would discuss it with my husband, but we're just not sure if we're comfortable putting such a strong drug in our baby's body.

So, we are in the non-intervention stage. Hopefully, and Lord willing, the hemangioma will continue to slowly shrink and fade without any treatment. Maybe in a few years it will be mostly gone, with just a little bit of redness reminding us that it was once there.

October: Just before we started Timolol treatment.
February: Just after we ended the Timolol treatment.


  1. Wow. It is so amazing to see the October/February pictures right next to each other. It's gotten so much lighter! And we're really thankful that you got there and back safely!

  2. That's a really impressive difference. I'm glad the visit went well and you made it there and back safely. I'll be praying that the break in treatment proves very successful in continued improvement.

  3. Great post, my dear Bess. Thank you for sallying forth into the great frozen wilderness to keep your appointment. The pictures say it all. We keep praying it will grow away ;)
    Love from Gramma

  4. It looks so much better! That's fantastic. The night terrors sound like no fun though, hopefully those will go away now that your not using the meds.

  5. Hello, I read your blog about your daughters treatment. We too are about to try that Timolol. Some time has passed for Chloe have you noticed any difference,, did you try the other medicine?

  6. Hi Rebecca,
    It has been a long time since we have done any kind of treatment for Chloë's hemangioma. The hemangioma really hasn't changed at all since we stopped the Timolol treatment, which makes me wonder what would have happened if we had continued to use it. It's been almost a year since our last appointment, but we are seeing Dr. Dominey again in a couple of weeks. I'm hoping that we will be able to talk more about using Propranolol. I will be sure to do another update after our appointment!