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 get that up to three times a week on average. Unfortunately, with everything still pretty busy, I have been forgetting to give him his tincture, and I suspect that’s part of why the last few visits have ended badly. When we were further from him, but remembering the tincture every visit, it seemed to be doing a great job of turning around bad visits within thirty minutes or so.

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.

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