One big change for Alex is that he’s on fewer behavior medicines, which is a big plus, as they didn’t seem to be managing his behavior in any real way. His most recent good moods have occurred since the medications were decreased, so we can say with some confidence that he doesn’t need to be quite as heavily medicated as he had been.

Another major issue I haven’t gotten into is Alex’s Sirolimus (Rapamune) situation. This medicine has been shown to shrink the SEGA (basically a type of brain tumor that can grow and cause major issues like hydrocephalus) in people with Alex’s condition, so we’ve tried to treat him pretty aggressively with it. The alternative to using this medication is brain surgery, which would be extremely difficult in a normal case, but very concerning for somebody like Alex who would have so much trouble keeping safe post-op. In any case, the drug, Sirolimus, is an immunosuppressant, and because of that it’s turned out not to be a great fit. A while back Alex got a pretty bad infection from a relatively minor injury, and we had to cut off the drug for a while so he could heal.

Last month, a similar situation got downright terrifying. Alex was hospitalized for about a week as a minor injury once again turned into an infection, and this time got completely out of control. For a while they didn’t know what was going on, and regular antibiotics weren’t making any difference. Eventually they found out what was going on, and got him treated for pneumonia, but it was one of the worst weeks his mother and I have been through in our lives. For a day or so, I was even convinced he was going to die — his fever wasn’t going away (and even hit 105 at one point), he was on massive doses of antibiotics as well as the Tylenol / Ibuprofen combination, and nobody seemed to be able to tell us what was wrong.

Needless to say, now we have to lower his Sirolimus dose significantly and hope for the best. It’s very hard to say if brain surgery is in his future, and that’s a very concerning possibility.

Here’s hoping I can post some better news soon.

Anyway, the overall visit was really good. It was nice to see Alex in the evening without some kind of self-injury going on. Maybe the Rapamune is working, maybe it was just a fluke. Either way, it was nice to have a visit where Alex was in a great mood without seeming to be “out of it”. We didn’t even bother with the hash / olive-oil concoction because he just didn’t seem to need it. (Don’t get me wrong, I’m still all about cannabis over his other meds, but if he can’t get it regularly enough to stop his dangerous meds, I’m not going to add it to his mix unnecessarily)

I hope this is a long-lasting happiness. It would be great to visit him in his new place and see smiles every visit. It wouldn’t make up for the distance from us or the painful trips to Portland he’ll have to make, but it would help.

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.

The good news is that it has been shown to shrink these growths (SEGAs) as well as reverse autistic behaviors to some degree — obviously we’d like to see the self-injury go away or at least cut down some.

The bad news is it’s just so risky. It’s got some ridiculous side-effect rates (something like 75% of all users get mouth ulcers, for instance), and there is some research that suggests it can increase the risk of certain types of cancer. It’s an immunosuppressant, which means he’ll have a weakened immune system. That’s bad for a kid who is constantly hurting himself (both self-injury as well as just skinning his knees and such during normal play) and putting all kinds of random stuff in his mouth. Not to mention being around so many different people throughout the day. A simple cold makes me worry now.

All in all, it’s a really scary time for us.

Our last few visits haven’t helped matters – his mood has been incredibly volatile, even with the new hash. The new medicine is obviously not yet fully in his system, so I can’t expect to see any changes in his behavior yet, but there was always the hope that it would somehow work a miracle after a single dose. When he was very young, he had infantile spasms (also known as West syndrome), and we got a medication for him called Vigabatrin, which stopped the spasms from the first dose. I guess I was hoping it was finally Alex’s time to have some good luck again, so even though it’s not a surprise that he’s still raging, it is still very hard to bear.