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Nothing wrong that a good whipping wouldn't fix, anyway!
Actually, that's what has us in a major frenzy these last few months. It was time to wean off the steroids, and it did not go well. Minifobette got off them okay, but Minifob definitely still needs them, and at a relatively high dose, or he regresses severely. Except being on them forever is not an option, they will fuck your shit up.
So we are now working with the doctor on a different combination of meds, including a higher dose of the non-steroid anti-inflammatories, plus a very low dose of immune suppressors, which have had good results in people with severe autoimmune disease. On the one hand, these meds are serious business and I'm scared to death of them. But on the other, there are kids who get kidney transplants or whatever, and they take immune suppressors for the rest of their lives and somehow manage. As the doctor said, "These are drugs that are reserved for very serious conditions like cancer--but frankly, in my opinion this is worse than cancer." And I agree. It was pretty damn devastating to watch him fall apart again within just a couple weeks of going off the steroids. Fortunately his teacher has been very understanding, since she now has to deal with a very different kid than she started with. We've gained about half of the ground back, but right now he is as bad as he was a year ago in most respects. Stuttering and perseverating much, much worse than he was in that last video. Very difficult time focusing, major emotional upsets over imaginary problems.
I keep remembering how Lookout went through this same thing with his son and Abilify. I have the medicine right here in my cabinet that would make him all better, but I can't give it to him because it will eventually hurt him worse than he's hurting now.
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