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 pharmaceuticals that can do some amazing good for the kid. We’ve been wanting to try it a while, and the growth in his brain is enough to justify it finally — either we try this medication or we get started down the road of brain surgery. Continue reading “The new medication”
Category: Alex
The hash and the fat
Well, we processed the harvest and ended up with a surprisingly small amount of hash. It’s enough to give Alex probably 100 doses, so I can’t really complain, but it was a lot less than I expected, considering how much bud and really good shake we started with. Turns out I probably made the hash incorrectly. Continue reading “The hash and the fat”
Mid-September Update
A lot has been going on lately and not much time to write. Alex’s mood has been very erratic, and we can’t really figure out how to explain it, so it’s just another mystery. He’s on allergy meds now, so we can’t blame seasonal allergies this time (though maybe he has extreme allergies, who knows). His list of medications is pretty long now — we requested a print-out of it just Sunday — and we don’t really like the idea, but we’re considering trying Haldol again. We’re also going to have to push hard on Rapamycin when we see his neurologist in a couple weeks or so. We hate all the medicating, but there doesn’t seem to be any option for getting hash. We will keep giving it as we can, but until we can get real legal help, we’re just stuck. Continue reading “Mid-September Update”
At least we know the hash isn’t hurting him….
We hadn’t been able to give Alex hash (we can’t do it on the premises of the facility, so it’s a tricky problem when he’s too angry to take anywhere), and his mood was improving. We’re not the kind of people to say it’s a miracle cure-all medicine, so naturally we had to consider the possibility that the cannabis was in fact making Alex agitated somehow, even though past experience showed otherwise. People change, reactions to different drugs change, etc. But after this past week, we saw some things that convinced us it wasn’t the hash. Continue reading “At least we know the hash isn’t hurting him….”
Wow, what a visit!
Today’s visit was far better than usual. In fact, it was one of the happiest for him since he’s left home. He was running around and smiling and giggly and I have no pictures or videos to show for it! Continue reading “Wow, what a visit!”
It’s a roller coaster still
Tuesday was good for Alex, it seems. We didn’t try to take him anywhere, just visited his home and spent time walking around outside with him. He had a few episodes where he hit himself or rubbed really hard at his head, but overall he was content. Not as happy as I’d like, but significantly better than Sunday. Continue reading “It’s a roller coaster still”
We’ve hit a new low
I don’t know what happened. Alex was so bad that he now has several new (and rather awful) bruises from biting his arms and hands. He bit himself, then while holding the bite pulled his arm / hand away from his mouth as hard as he could. I’m amazed he didn’t take chunks out of his arm. Continue reading “We’ve hit a new low”
August 19th visit made up for it
Alex had a horrible visit yesterday evening. We wanted to repeat the Tuesday happiness and get some more pictures and video, but whatever fleeting happiness my little boy enjoyed on Tuesday was completely gone yesterday. We couldn’t even get him into the car to try to take him to a playground. He was hitting himself, screaming, and only for about five minutes did he smile any. Continue reading “August 19th visit made up for it”
August 17th – not so bad after all
I was very anxious about yesterday’s visit, because Alex had been having such a horrific time lately, but I just thought I should follow up so the many regular readers (all four of you) wouldn’t be left hanging — Alex was in an incredibly good mood. He was smiling, giggling, and at his worst was pretty neutral. Not a single episode of self-abuse the entire hour we spent with him. We gave him some hash, of course, because it helped him so much Sunday evening, but we got to see a really happy Alex even before it could possibly have kicked in (he was happy before we gave him his dose). Continue reading “August 17th – not so bad after all”
Alex updates – August 17th
It’s been a while since I had much to say about Alex’s situation. He’s been his usual self, on and off rage issues, and it’s just been hard to want to write much when his situation is only a little better than when he was at home. Continue reading “Alex updates – August 17th”