Friday, August 20, 2010


Leila's treatment for her hemangioma is officially underway. We decided to go with treatment via a research study at Children's Hospital because, well frankly, it just made sense. Here's why: Hemangiomas have historically been treated with prednisolone with great success. However, the corticosteroid has lots of unpleasant and scary side effects (vomiting, chubby cheeks, temporarily stunted growth, irritability, insomnia - to name a few). And let me tell ya, when you've had a chubby-cheeked baby with reflux and colic due to milk protein allergy, the idea of having a crankier and pukier baby who sleeps even less and has chipmunkier cheeks is really frightening. There's another medication, propranolol, that has accidently shown some efficacy in treating hemangiomas, but it doesn't have a well-known treatment history like prednisolone does. The benefit of the propanolol is that it has relatively few side effects, so that's comforting. Bottom line, Josh and I couldn't make up our minds about treatment because for every pro there seemed to be a con. Aside from Leila's situation, participating in the study seemed like the right thing to do given that my career is centered around doing clinical research to help children get better. I felt like it would be kind of hypocritical to not consider helping other kids in the process of treating Leila's hemangioma. So here we are, participating in a single-blind clinical trial of both medications. We were randomized to the prednisolone arm of the study and we're now one dose in. We had to take her in to the hospital for an ultrasound, blood sugar check, and to get the medication. Josh and I hated every minute of it. I actually cried during the ultrasound. To see such a little peanut pinned down with a wand over her face and goop running into her eye just seemed cruel. The fact that she was wailing so hard she was purple didn't help. Fast forward to today - so far, we've had a good day. Leila has been smiling, resting, cat napping, and occasionally crying (well, I hear babies do that from time to time...). If we don't see any progress in the next 2 weeks (aka the hemangioma doesn't shrink), we'll be taken out of the study and switched to propranolol. We're keeping our fingers crossed that the medication is effective and she (and we!) doesn't have to suffer many side effects.

On a lighter note, Murphy is now bonded with our little Roger Clemens. From here on out, they'll be known as "The Steroid Siblings." Or should it be "The Prednisone Pair" ?? :)

See my feet! My blood sugar was normal - 82.

Mommy is beyond tired. I mean, look at her! By the way, this fist tastes great...nom, nom, nom...

Daddy walked me around to make me feel better. It worked!