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Who is Alex?
Alex suffers from Tuberous Sclerosis, seizures, Autism, and very severe self-injurious behaviors. He hurts himself so badly that he can't live with us anymore. After the heartbreak of placing him outside the home, now we're having to fight an uphill battle for the medicine that may actually help him.Read his overview or in-depth introduction.
Tag Archives: rapamune
Some Alex updates finally
Alex is up and down, as usual, though he had been doing really well from mid-June until about last week. We’re starting to get settled in, and finding time to visit him at least twice a week. Hopefully we can … Continue reading
Yesterday was really nice
We visited Alex yesterday. Since we know our days our numbered, we figure we can afford the extra gas that comes with visiting a lot again, so we’re going to try to get in a lot of visiting before he’s … Continue reading
Thanksgiving update, rapamune success maybe
Alex had an incredible Thanksgiving. My whole family came up to visit for part of the weekend, and it was really nice to see everybody, but the real reward was when we tried a new trick with the hash in … Continue reading
The new medication
Last Monday, Alex started on Rapamune finally. It’s a wonderful but horrible medication for Alex. In terms of risks and side-effects, it scares the hell out of me, but for Alex’s situation (TSC and autism), it’s one of the few … Continue reading