Friday, December 4, 2009

My little guy's eye: a totally off topic PSA

On the day he was born, his eyelid, like the rest of him, was just perfect and beautiful.  But by day three or so, we noticed what looked like a bright red scratch right above and running parallel to his eyelashes.  By about ten days it was clearly growing like mad.  And at seven weeks it looked like this:

It was a hemangioma, sometimes called a strawberry birthmark, which is normally not any reason for great concern.  Apparently something like 10% of caucasian babies have one or more of them.  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 his was on his eyelid there was a chance that it could get so big as to block his vision, which would leave him blind in that eye even after the hemangioma was gone.  Also, hemangiomas can distort the underlying flesh, and can be especially disfiguring if on an eyelid or at the corners of the nose or mouth.  I'm not sure if this is always the case, but my little guy's hemangioma seemed to involve the entire thickness of his lid, so the underside was also beet red. 

Before about a year ago the only treatments for hemangiomas were steroids (either shot into the hemangioma or given systemically) and surgery.  The steroids caused 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. 

So, I feel so lucky that he was born when he was!  It was hard being one of the first to use a new treatment, but because the old treatments were so bad, I feel like we really dodged a bullet.  About a year before he was born a pediatric cardiologist in France was using propranolol (a drug that had been used on pediatric heart patients since the 80's, and on adults for much longer) on several patients, and a couple of them had hemangiomas.  Over the course of their treatment, the doctor realized that the hemangiomas didn't grow and may have receeded earlier than what would have been expected.  After that, there was a trial involving 12 babies that had good results, and then my little guy was born.  Very few babies had been treated with propanolol before him and I believe that he was one of the first if not the very first in San Diego. 

Even though propranolol seemed like such a godsend, it was also scary to make the decision to use it.  Side effects included a possible lowering of blood pressure and blood sugar.  And can you imagine looking at your two month old and trying to figure out if his blood pressure might be low?  The most likely symptom would be sleepiness.  So, we had to have blood pressure checks three times a week.  And if you've ever had to have your newborn's blood pressure checked, you know that it doesn't seem like an exact science.  They would take it on each limb (if he was calm enough) and often the results would be all over the map. 

So I wanted to put our story out there for other parents considering propranolol.  When I was googling it eight months ago, there was next to nothing on the web as far first hand experience with it.  And there were a lot of people saying it shouldn't be used for this purpose at all.

If I had it to do again, I would definately do propranolol!  It was scary at first, but after a few weeks of bp checks and with my little guy getting older, it did start to get pretty tolerable.  We saw a noticeable improvement within the first 48 hours, mostly a decrease in intensity of the color.  It went from a deep glaring beet red to a grey/pink.  (This was the day before we started and this was what it looked like 48 hours in.)

From what I was able to find online, it seemed like most or all of the improvement would be seen in the first 48 hours or so, but that wasn't true for us.  His hemangioma was almost completely gone by six months, after being on propranolol for a little more than four months.  This pic was taken about a month before he stopped taking propranolol, and as you can see the lid is still a little misshapen, but not nearly as big and puffy or red.

After he stopped the medication at a week shy of six months, the hemangioma came back a bit, not so much in color, but it is a little puffy.  But it hasn't bounced back enough that it seems like it could be a threat to his vision.  And yesterday, at 9 1/2 months, his dermatologist saw it and thought he was completely out of the woods and would not have to go back on the meds.  He may need some reconstructive surgery, which would happen just before kindergarten, but he probably won't.  I'm really thrilled by how it all turned out!  Phew!
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