My 10-year-old son was diagnosed in the last month. Before that, he missed about a month of school while we were trying to figure out what was wrong with him. He just has pain with some other associated symptoms, but no D or C, so he doesn't have the embarrassment issues, thank goodness.
I met with our school guidance counselor and she recommended going through a 504 or ES process; I believe the 504 is federal and the ES is state-based, but they are similar. They are designed to support a student that is going through something that disrupts some aspect of their schooling. For example, a kid with a badly broken leg may need some kind of accommodation to get the most possible out of school. There is no money attached to this to pay for private tutors or anything like that, but in Vermont anyway, the school is legally obligated to provide for kids with medical difficulties. We only had one initial meeting, so I don't really know what our options will be.
It sounds like this is a very difficult time for you and your son. I wish you the best of luck.
-Annika
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