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 order to get Alex to be stable for a four-hour visit: we dissolved it into olive oil.

I had mentioned before that hash by itself may not be doing much for Alex unless he’s getting fat with it. We have often wondered if that’s why our results with MMJ have been so hit-and-miss. So lately we’ve been trying to get fat into him around the same time we dose him — but when his behaviors are really bad, this doesn’t work, because he simply isn’t interested in eating.

A friend suggested that we try dissolving the hash into olive oil before administering it, and we did so on Thursday. His first hour with us was absolutely brutal – at first he seemed okay, but quickly his mood turned sour, and he began hitting and biting himself as well as kicking at anything he could. It was pretty rough for a while.

About an hour after administration, though, he calmed down quite a bit. He was still alert, and had some fun running around outside and playing. He was still in his own world for the most part, but he engaged us a little bit, clearly enjoyed the energy of the other kids, and was full of smiles and giggles. It was a wonderful day for sure.

Unfortunately, when we visited him at his home on Sunday things were a bit weird. He was mostly happy, and very relaxed, but he seemed to be really out of it. I’m hoping it was just the result of a tiring day or something, but it’s concerning all the same.

One bit of excellent news we just got today is that Alex’s SEGA has shrunk by 2mm. It’s a measurable reduction, which means the Rapamune is likely working and this isn’t just a random coincidence. I’m hoping this will continue, but almost as important as shrinking the SEGA, I’m hoping that the medicine will help with his behavior. There’s a chance it’s pushing on the part of his brain that controls rage, based on some reading my wife did recently, and if so, shrinking it could relieve some of his pain in this area.

We’ll keep watching and hoping, I guess – I just feel like something bad is about to happen again. Good news never seems to last with Alex.