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.|
|An example of angifibromas in a young teen.|
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?!