Hemangioma Update 2012

Chloë went to see her dermatologist, Dr. Dominey, over a week ago.  My parents were in town, so my mom came along for the ride, and she was very helpful with the girls (and took us out for a yummy Mexican lunch after the appointment!).

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.

2010: 4 months old.  We had just started treating with Timolol.
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.

Hemangioma Update

It has been six months since I've blogged about Chloë's hemangioma. Back in February, we saw Dr. Dominey, and decided to quit the Timolol treatment. In March, things look virtually unchanged, and so we have had no appointments or treatments for six whole months. And in that time, the hemangioma has hardly changed. As Chloë grows and skin stretches and grows, I think it's normal to see a very minimal amount of change in the shape.
So here is six months ago, and here is this week.

There is a slight difference in camera angle, but I think you can see that very little has changed in six months. And, just for a good comparison of what has changed, check out the picture from exactly a year ago, shortly after we started the Timolol treatment.

We had a short appointment with Dr. Dominey, and we basically just reiterated what we said six months ago: let's just wait and see what happens over time. She mentioned that there have been some success stories of the use of oral beta blockers in her recent literature. I said we might consider it in a few more years, when Chloë is older and her body is better able to handle such a drug. But for now, we wait and see what the next year or two brings. Maybe it will start to fade on it's own.

So we continue to do nothing. It is almost funny how I don't even see the hemangioma anymore. Her hair is long enough to put in pig tails, and I don't think twice about doing so. We get a very occasional question from a stranger, but people are usually so distracted by her diva personality that they don't even notice the spot behind her ear.

God is good.

For the few of you that found this blog by searching for hemangiomas, timolol, beta blockers, and before and after photos, you can see a few more blog posts tagged under the hemangioma label.

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.

Hemangioma Treatment.

We took Chloë to see Dr. Dominey last week. The consult went well. She looked at, measured, and photographed the spot behind Chloë's ear and said "yup, it's a hemangioma."

First she told us what we were hoping to hear. It shouldn't pose any risk or threat to our baby. Praise God. Besides the fact that skin breakdown is to be expected, and therefore tender, occasional discomfort is really all we have to worry about. Then she told us that infantile hemangiomas often grow for the first year or two, and then they start to fade and shrink. Generally speaking, 50% of them are gone by the time the child is 4, and 90% of them are gone by the 9th birthday. So even if we don't do anything, chances are it will fade and disappear with time.

Then we talked about our treatment options. We had been under the impression that laser treatments might be a good way to reduce the growth, but we learned that laser treatment really only serves to cauterize the growth if there is lots of bleeding. To laser the "healthy" skin would just cause bleeding and scabbing and eventually, scarring. So we threw that idea out of the window.

Dr. Dominey talked about corticosteroid treatment, and told us that it has had a high success rate of slowing the growth of hemangiomas. But, there were the obvious steroidal side affects; stunted growth, slowed metabolism, and redistribution of weight. I really didn't want to subject my baby to a drug that would be so harsh to her tiny little growing body.

Then we heard about oral Propanolol. A beta blocker, it is a drug used to reduce blood pressure, and also has an affect on slowing the heart. I was hoping she would have some good information on this, because it seemed like a good option, but it made me nervous to think about giving my baby something that could affect her heart and blood pressure. It is a fairly new treatment option, but it seems to have good results on reducing the hemangioma. But, Dr. Dominey then told us, she had recently learned of three cases of babies on this drug turning blue, becoming unresponsive, being rushed to the hospital, and miraculously surviving. Um, I think we'll pass.

Finally we talked about Timolol. Again, a beta blocker, but a gel applied topically, and not an oral med that absorbs into the whole body. It has actually been around for years as eye drops to treat glaucoma, but only recently has it been used as a topical treatment for hemangiomas. Although it is still considered to be experimental, it has been very successful in halting and even shrinking the growth. Non-systemic, non-invasive, and inexpensive, Bryan and I decided to go for it. We dab it on twice a day, and already I think the hemangioma looks slightly different. We are praying that this works well to at least slow down the growing. We go back to Spokane in a few weeks for a follow-up appointment.

This is how it has changed and grown.




You can find a post about follow up and how the treatment has worked here.

Going to the Dermatologist

Over two months ago, we decided we should have a specialist look at Chloë's ear. Chloë's doctor, Dr. Worth, recommended Dr. Dominey, a dermatologist in Spokane. With over 20 years of experience, we are excited and relieved to have her take a look at the hemangioma behind Chloë's right ear. Tomorrow morning we drive up to Spokane for the highly-anticipated appointment.

Having done quite a bit of research in the last several months, we are prepared for the worst, but hoping and praying for the best.


See the post about the consult and our decision on treatment here.

It Must Be Bedtime

Port Wine Stain

Update from October 2010: We now know that isn't a true Port Wine Stain, but a Hemangioma. See the next post about this here.


When Chloë was 8 days old, I noticed she had what looked like a dark purple splotchy bruise behind her right ear. The only thing I could think of was that she must have pulled on her ear really hard during the night and broken a blood vessel.

But after a few days, the bruise wasn't fading. In fact, it seemed like maybe it was even darker and slightly bigger. It crossed my mind that it looked a bit like a port wine stain, but I couldn't imagine that I would have missed it for the first 8 days of Chloë's life.

After a couple of weeks, I came to terms with the fact that I really must be that oblivious, that that it really must be a port wine stain. But the two blotches kept slowly changing, and I kept meaning to take a picture or two.

So I finally got a few pictures over a week ago, and already they have changed. The rounder spot was once flat, and now has a good height to it, kind of like a mole. Of course I worry because the spots are on her head... close to her brain.

Fortunately, both her Grandpapa Doctor and her Family Practice Doctor think that the growing should slow down, and that the spot shouldn't cause her any problems in the future. If the spots do continue to grow, there are options out there for laser treatment or even plastic surgery. We are praying that we won't have to worry about the potentially painful and expensive treatments.