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....more
Why is this hard to get a rapamycin???more

To Tell or Not to Tell....That is Thy Question.

Those who are close to us know all about R's Tuberous Sclerosis diagnosis and struggles. The seizures, the surgery, the meds, the speech, fine motor and gross motor delays and all that comes with TSC. Most are understanding, sympathetic and encouraging. The question is do I explain and tell others? IE: gymnastics coaches.  I don't know why I'm hesitating to do so....more

Pre-Surgery Steps