nzers...welcome to the board, though I'm sorry you have to be here. It sure sounds like you've been through the mill trying to get a diagnosis for you daughter. We had a somewhat similar experience with my son as he had been anemic for a year and a half and no one knew why. He wanted to continue his sport (swimming) but was unable at that time because he felt sooooo lousy. We went from doctor to doctor and they told us "standard iron deficiency anemia", and then they would run down the list once again of what we should be feeding him. I explained over and over that nutrition has always been top on the list and that he eats very well, so I felt he was getting a *very* high-quality diet. Not to mention we'd had him on iron supplements for *months* and had seen little improvement. Ultimately (within about
a 6 week time frame), he began to drop weight rather quickly and then began a full-fledged flare. It was pretty clear then what the problem was.
I am much like you in that I am so skeptical of drugs. Our pediatric GI initially wanted to put my son on Imuran (after the 8 weeks of prednisone), but we pushed for a "wait and see" approach because he was doing so well. Our GI was
open to this and stated that some folks get along fine throughout life with the mildest of medications (Pentasa or sister drug, Asacol). I realize that my son may not always be that fortunate, but for now knock on wood, this approach is working. He *seems* to be in remission, has grown a couple of inches, and in the early fall went back to competing in his sport. Oh, and needless to say, he is no longer anemic.
We all (family of 4) now follow The Maker's Diet (book by the same name) and incorporate aspects of the Specific Carbohydrate Diet (SCD, from the book "Breaking the Vicious Cycle"). These two seem to be the most popular among those who choose to address diet. (I have this forum to thank for educating me on this! And lots more!) That said, we didn't start the diet until sometime after my son had come off prednisone--he was eating everything that wasn't nailed down at that time! He also takes lots of supplements. I personally believe they can't hurt and they just might help. Especially probiotics and digestive enzymes. And no, GOL and Primal Defense are not junk, they're simply one of many choices on the market. Thankfully, there are many brands to choose from. I read somewhere to choose a multi-strain probiotic with at least 20 billion cfu.
Oh, and one more thing. I don't know if this is typical, but when my son came off prednisone he had several days (4?-5?) of what seemed like a mini-flare. I called our GI's office and they told me to wait and see; that this sometimes happens as the body adjusts. I'm glad they kept me from the panic I was working myself into, because his symptoms did resolve! It was probably about
that time we started the probiotics, so maybe that helped.
Feel free to email me personally if you'd like. It's nice to have a mom network! I hope she continues to do exceedingly well!!!
Mother to 16 year old boy diagnosed in June, 2007.
Currently taking Asacol, omega 3s, digestive enzymes, probiotics, iron, vit. C, calcium w/D3 and a good multivitamin.
Started The Maker's Diet in early September.