Wednesday, May 11, 2011

Operation Goodbye Hemangioma

Today, at exactly 11 weeks old, C started a treatment for her hemangioma. After much research, we went into our appointment on Monday with reservations. We were seeing a pediatric dermatologist who specializes in hemangiomas and happens to be the only one in the state. I had read countless articles and blogs and watched way too many heart wrenching you tube videos of painful laser treatments and surgeries performed on infants just as small as our baby C to treat hemangiomas very similar to hers, so I braced myself for shocking suggestions.

I was pleasantly surprised. After waiting in the bright and cheery waiting room of the Specialty Division of Children's Hospital South, we were quickly taken back to check vitals and meet with one of her many residents working underneath her. The nurses were wonderful with C and the residents were all so nice. I was most impressed with how "normal" they seemed to think C's case was, having seen countless just like it. When Dr. Theos entered the room, she got right down to business. While she assured us that the location of C's hemangioma would not likely affect any vital organs (most concerning is her left eye), there is always a cosmetic aspect to consider. Even though it should shrink and vanish on its own by the time she is two, it could leave scarring, stretched skin, or other permanent markings. Taking that into consideration, she suggested a relatively new and slightly experimental treatment that was discovered by accident while treating children in France:

Propranolol. A blood pressure medication.

By taking up to 0.8mL, three times a day, the decreased blood pressure should allow the hemangioma to shrink at a rapid pace. We could see beginning changes in as little as TWO DAYS and it could be completely gone in as little as two to three months! After an EKG deemed C's heart strong enough to handle it, it was decided we would start this morning with our first dose under nurse supervision at Children's. We started with 0.2mL and after her blood pressure checked out okay, we were sent home to continue the next 5 days of doses every 8 hours on our own. We will increase to 0.4mL on day 6 (again under nurse supervision) and then again to 0.8mL on day 11. 

I will be documenting her progress in hopes that other parents will find this information useful. I know I spent countless hours searching for answers online only to find mostly disappointing stories. Hopefully, C's case will be a success! 

Day 1 of treatment
11 weeks old

We are positive and hopeful that this will work, but know that it is experimental and we may have to explore other options. Either way, I am excited that modern medicine is allowing our little trooper to be the beautiful girl she is. Operation Goodbye Hemangioma has commenced!

"I believe that the happy girls are the prettiest girls." -Audrey Hepburn

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