Update from the doc appointment today: we are going to try switching to 6MP after all. This is an especially good time to do it because for years now, one lab called Prometheus has held the patent on the blood test to determine how much of the medication is circulating in your system, which is necessary to safely use the drug. They have been bastards and were charging $700ish for the test, which often must be done several months in a row and was not usually covered by insurance. But apparently over the summer one of the unpublicized cases the Supreme Court heard was the Mayo Clinic suing Prometheus over this monopolizing behavior, and the Mayo Clinic won. So now you can get the test done for a reasonable fee and covered by insurance. This wasn't something that was keeping us off the drug prior to this, but it does make it easier to try now.
But in less optimistic news, Minifob has again lost weight. The doctor said we are now officially on the lookout for
wasting syndrome. He was quick to say that Minifob in no way qualifies for the diagnosis yet, but he is nonetheless falling further and further behind the standard growth chart, despite taking in 150% of the daily calories a 7-year-old is supposed to consume, and it is especially concerning given that he just came off three months of steroids and should have been aggressively gaining, if anything.
But he said there have been some patients that start taking 6MP and just sprout like a weed, so with any luck that will be us too.