Tuesday, August 3, 2010

Hemangioma update

On the day she was born, her eyelid, just like the rest of her, was just perfect and beautiful.
By week 4, or so, we noticed what looked like a bright red scratch, in the crease of her left eyelid

and now by week 13 it looks like this:

It is a hemangioma, sometimes called a strawberry birthmark, which is just a vascular birthmark or tumor that is normally not any reason for great concern. Apparently something like 10% of babies have one or more of them. They are more common in caucasian babies, females, babies born prematurely, and babies that come from complicated pregnancies...so check, check, check and check! Obviously Madison fits the standard! There seems to be no rhyme or reason as to why some babies get it and some don't. It just happens! They normally grow for six months to a year -- to various sizes, some never getting big at all, but some getting pretty large -- and then begin to receed and eventually, usually by age five, disappear. They don't usually require any medical treatment. But because Madison's is on her eyelid there is a chance that it could get so big as to block her vision...which is already beginning to happen at this point, and if left untreated would leave her blind in that eye even after the hemangioma is gone, due to her vision not being able to develop at this pivotal age.

Before about a year ago the only treatments for hemangiomas were steroids (either shot into the hemangioma or given systemically) and surgery. The steroids cause side effects, like growth retardation, thinning of the bones, and adrenal suppression, which obviously would be very scary in a newborn, especially since it would be given for several months. From what I could gather, surgery on a hemangioma doesn't always lead to great outcomes and is more difficult than other similar surgeries because a hemangioma is a vascular tumor and thus is prone to serious bleeding and not to mention scarring.

As I mentioned, in her 2 month post, this was something that we would be watching and would begin to treat when the benefits outweighed the risks. Well we have reached that point. We started getting more concerned last week when we returned from vacation because it had grown significantly in the 2 weeks we were gone. In fact it was starting to dip down into her line of vision and the puffiness was getting so great that she had a hard time fully opening her eye. Her pediatrician agreed that is was time to start treatment a.s.a.p. She referred us to a Pediatric Opthamologist to have her vision checked and to start treatment. We took her in yesterday to the Opthamologist and they dilated her eyes and determined her vision is just perfect! He did agree that it needs to be treated a.s.a.p. for fear that it would get larger and start causing vision problems. He was pleased to see that even though she can't open her eye fully, she compensates by turning her head to see things to her left. Her eyes track together and her pupils are equally reactive...all good things. He had his nurse call the Pediatric Cardiologist for an emergency appointment (apparently it normally takes about 3 months to get an appt. with this group)....she got us in this morning (24 hours later) to be seen and evaluated for treatment.

When we arrived they started an EKG and took her vitals and talked to me about the plan of action. You see, the drug that she will be taking is actually a beta blocker, Propranolol, given to patients most often for treatment of SVT (super ventricular tachycardia). The drug, in heart patients, is used to control or slow the heart rate and also lowers blood pressure and blood sugars. It was discovered by a Cardiologist in the UK last year that it also, somehow, clears up hemangiomas! This Cardiologist had an infant taking Propranolol for SVT, this patient also happened to have a hemangioma (which was uncomplicated). Shortly after starting the meds the hemangioma shrunk and completely disappeared....unusual....so he began to investigate. A study performed last June confirmed that propranolol does in fact treat hemangiomas and since then it has been used, in some places, as the new standard of treatment, even though it has not yet been approved for the treatment of hemangiomas. This is the very best option compared to the other treatment options and our Cardiologist assured us that they have been using this drug on infant cardiac patients for a long time. So, while they have no long term studies for the treatment of hemangiomas with this drug they do for the treatment of cardiac patients. The only drawback is that since Madison has a perfectly healthy heart, beating normally and with normal blood pressure...taking a drug that is meant to slow heart rate and lower blood pressure could potentially lower hers to an unfavorable level. When they first started using this treatment for hemangiomas last year, they had the patients hospitalized for the first few days so that they could monitor their blood pressure and blood sugars. They found that most infants had no problem with the medication because it could be given at a very low dose and still treat the hemangioma. However, in the few patients that did present with dangerously low blood pressure or blood sugars, they also had the typical symptoms you would expect. So, now they start infants on a half dose for the first 3 days to make sure they tolerate it and then they put them up to a full dose for about 2 months and or until the hemangioma goes away...then they slowly wean the patient back off.

The cardiologist said that Madison is the first patient of his to be treated for an eyelid hemangioma with this medicine and while it is hard being one of the first to use a new treatment, I feel like we are making the best decision, because the alternatives are so bad...and not treating it will cause visual impairments. He has personally treated other infants with hemangiomas in other locations and has seen great success in those. It is also little scary to make the decision to use it. Can you imagine looking at your 3 month old and trying to figure out if her blood pressure or blood sugar might be low? The most likely symptom would be sleepiness, crankiness and sweatiness. The cardiologist said that with her eating every 3.5-4 hours during the day, we should not notice a drop in blood sugars so long as we give the medicine with her feeds. The downside is...and this isn't that bad considering the alternatives...it has to be given 3 times per day 8 hours apart. Well, wouldn't you know that little miss Madison started sleeping 13 hours thru the night (up from 10 hours) this past week when we finally got her reflux under control with Medication (poor thing she is just falling apart huh!?). So, he said we will have to wake her in the night to give her the medicine and a full feed...so her blood sugar doesn't drop in the night. The good news is, it's temporary...2 maybe 3 months and she can go off the meds and sleep all night again.

Until then we will continue pray that her vision is not affected by her hemangioma and that this treatment is just what she needs to not only treat it but hopefully do so without any further complication!


Devion said...

WOW! I hadn't caught up on your blog in a month or so, I guess. I had no idea! Poor baby girl! Many, many prayers coming your way for safe, effective treatment! Also, prayers that this time goes by quickly so that you can get back to sleeping full nights! :)

Jaime said...

I had a hemangioma, I woke up one morning at about six months of age and it was just there. Big, bright, and red! It was on my top lip. We never treated it, it went away on its own but I do have a scar where it was. Sounds like the treatment you have opted for Madison is the best available option, I look forward to seeing pictures of that beautiful little princess pie in the coming months, I'm anxious to see how well the treatment works for her (and how quickly).

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