something to read and mri results

This woman has a daughter with Tuberous Sclerosis, and just so happens to be an excellent writer. This post moved me, for obvious reasons, but I'm sure even those who aren't parenting a child with many health needs can easily find meaning in this. It's kinda long, but well worth the read. http://jenniferlawler.com/wordpress/?p=747

Alex had a 5 month follow up MRI done last week, and it shows there have been no changes. This is a relief! There is significant change from the MRI two years ago when we found out about his SEGA, but it's still not blocking the CSF or causing pressure and appears to be slow growing. It'll still require some sort of intervention (medication or surgery) because it will eventually cause hydrocephalus if left untreated, however we have plenty of time to give medication a try. That's right, the neurologist is finally going to get Alex on Rapamycin, the drug I've been wanting him on for so long now. The really exciting drug that will shrink his tumors (brain, heart, kidney, eye, skin), shows promise in reducing negative behaviors, as well as increases in cognition. FINALLY. I should hear something by the end of this week (neuro wanted to talk to a couple of colleagues to find out dosing and monitoring info). Which in real world terms means I will finally hear back from the neuro's nurse within a couple weeks, and we should have Alex on the med within a month or so.

Rapamycin is an immunosupressant, and as such carries some risks. So far it's been well tolerated in the TSC population (much smaller dosing requirements than when used with cancer and transplant patients), and we'll just hope for the best with Alex.

Here's my son's brain and the mess therein. The large, obvious growth circled in red is the SEGA. The other junk growing along the other side, one of which I circled in white, are SENs which could eventually turn into SEGAs. The white circled one isn't of much concern, even if it does grow more, as apparently there is plenty of room and it's not near the Foramen of Monro, which is where the CSF fluid flows in and out...which is right where the SEGA circled in red is sitting. So that rough edge opposite the SEGA could potentially turn into a problem if it decides to grow. Of course, this is precisely why we are starting Alex on Rapamycin...so hopefully we won't have to deal with it.


And here I've circled all the crap that shouldn't be there. The sides should be smooth, like you see there towards the bottom.