Sunday, January 20, 2013

Sweet Pea's Hemangioma

Where to begin? This issue has consumed my thoughts these last few weeks. Prior to Sweet Pea's four-month appointment just before Christmas, I was not worried about her hemangioma at all. Hemangiomas go away on their own, right? So as long as it wasn't causing any health issues, we would leave it alone.

But at that appointment last month, the pediatrician expressed some concern that it was affecting her vision, and recommended that we see a specialist. We scheduled a visit to a pediatric hematologist for January 15. And I began to research.

Wow -- what a lot I have learned since then! Sweet Pea's hemangioma is compound, which means it exists superficially (the red part) as well as deeper, underneath her skin (a bluish-looking area). Compound hemangiomas are unlikely to go away on their own. Furthermore, the skin on the nose is thin and not very elastic, which means a hemangioma of this size is more likely to leave loose skin even if it did resolve on its own.

Hemangiomas continue to grow until 12-18 months, which means hers could get substantially larger.  There could be profound psycho-social implications if she goes through her childhood with such a large, obvious mark on her face. It is at least partially blocking the peripheral vision of both eyes, primarily the right eye.  And all the literature I read emphasized that early intervention and treatment is best. The "wait and see" approach was clearly not an option.

While waiting for the appointment on the 15th, I contacted a plastic surgeon in New York City who specializes in infant hemangiomas, Dr. Levitin. He confirmed my findings and recommended that Sweet Pea begin taking a drug called Propranalol right away. Two dermatologists, including one who specializes in infant birthmarks, said the same.

Propranalol is a beta-blocker, a blood pressure medication that's been around for decades. Several years ago, doctors quite accidentally learned that it dramatically helps reduce the size and color of infant hemangiomas, sometimes causing them to disappear entirely. Since then, Propranalol has quickly become the standard for treating hemangiomas, so long as the infants are under the age of one (the growth phase of hemangiomas).

So we were not surprised at all when the hematologist also recommended Propranalol. After an extensive conversation with the doctor, MJ and I agreed that Sweet Pea should start it right away. Two days later, after blood work and an echocardiogram to confirm she was healthy enough for the drug, she had her first dose. 

It was given at the hematology clinic, and afterwards they monitored Sweet Pea for three hours to ensure she did not have a serious reaction. Sweet Pea did wonderfully. They put us in a comfortable room with a recliner and a crib, and Sweet Pea napped through the blood pressure checks every 30 minutes. It was January 17th, and Sweet Pea was exactly five months old.

She is beginning with .25 milliliters three times a day, but that's just a small part of the full dose for a baby her size. She will have weekly appointments where they will track her tolerance of Propranalol and slowly increase her dose until it's at the full level. Then the appointments will eventually be stretched out to once per month.

She will remain on this medication until she's about one, when we will slowly wean her off it. Our hope is that the hemangioma is small enough at that point to go away on its own, or be easily treated with laser therapy. There's a chance it could be gone altogether, but I don't want to get my hopes too high.

I will be documenting our results on a separate page of this blog, found here, in the hopes that other families dealing with hemangiomas might find it helpful to read about our experiences and thoughts on the process. We appreciate any prayers for Sweet Pea's continued tolerance of Propranalol, and that the drug is effective. Hopefully this is the beginning of the end of this hemangioma!

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