Weird what happens when one comes back and revisits old posts. I didn't even recall putting the "flare" post on here.
So here's what happened: Chana had labs drawn and....they were fine (whew) and the dr. said "go to Florida!". Cutting out the nuts and seeds did seem to be a big help, as her stomach eventually stopped hurting so much (oh yeah, she also went back on super-duper antacid, so now, should she so desire, I suppose she really could "eat the whole thing" like those old commercials used to say). Her iron count was still low, but the two main markers of inflammation were okay.
Had more blod drawn last week, and the iron count was eek-scary lower (add in iron pill [which, since it's very difficult to digest, is technically a no-no on the diet, which is why we didn't start it earlier]), and one of the inflammatory markers is creeping up. STOP!!!! Do not increase! Do not give my child a flare. Do not show even an inkling of my child having a flare.
Did I mention that the Crohn's and Colitis Foundation of America (CCFA) sent both Chana and me separate fundraising letters today?! I'm totally disgusted. Chana's letter was already in the recycle pile when I fished it out. I want to know from them how they got her name. Does Mass General sell the names of the newly-diagnosed?! It's bad enough that when Chana was in the hospital, the Clinical Nurse Specialist (which is technically what I am, so I really wanted to like this woman) handed me this huge pile of info from CCFA including what felt like numerous membership appeals and donation opportunities. I didn't join. (Which leads to the question of why *I* am getting these letters as well, but I don't feel anywhere near as outraged about my getting them as I do my 9 year-old). And, yes, there is probably a bit of denial mixed in to these feelings....
I hate Crohn's disease :(
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If the hospital sold it, that's illegal. HIPAA and all. When I worked at NY-P, in the development office, it was a big problem because we could no longer look at who had money who had been, say, a heart patient when it was time to raise money for a new heart surgery floor. It sounds disgusting but that's how it's done. Or how it was done--now, technically, nobody is allowed to do that.
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