Thursday, January 26, 2012

TSC Tuesday ~ Topical Rapamycin Where Art Thou?

Those pesky angiofibromas on Bup's fluffy cheeks are getting more pronounced all the time.
If he's hot, or sad or had a seizure they are really obvious. Right now they just look like little dots and no one realizes they are tumors.

Ignore the ketchup...but you can really see the angiofibromas in this pic.
Although one day....when he's a teen, they will look horrible. Angry red like deep cystic acne. As if life doesn't have enough challenges! And yes...I'm vain that way!

An example of angifibromas in a young teen.
There have been days when R has scratched them until they bleed. Scar tissue? No thank you, we're not interested in fostering that either.

In the very recent past, the only option for the angiofibromas has been laser surgery. Ever tried to get a 4yr old to sit still so someone can laser his face........which may feel like being snapped in the face with a rubber band?  Ever tried to sit through laser hair removal of ...well, any area? Super fun.

I. Want. Rapamycin!

We learned of Rapamycin through a TSC Teleconference last year.  Wuhoo! A topical ointment compound which eliminates the facial skin tumors while being used. They return after discontinued use.

You know what else I determined today? It's easier to secure brain surgery than a topical ointment to diminish angiofibromas. How's that for a kick in the tucas?!

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