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In reply to the discussion: Nitwits & Why Physicians Lose Credibility [View all]IdaBriggs
(10,559 posts)I must reasonably accept the reality that *I may be wrong.* Now, if I thought I was wrong, I would *not* be wasting my time; when we started asking parents to report for the project, we had to come up with *objective* standards of measure, and since neuromuscular issues run a gamut, that was quite a challenge. And keep in mind that prior to the experience of the neighbor girl, my knowledge of the subject matter for neuro issues was best summarized as "non-existent."
I came into that portion of the discussion with absolutely no pre-conceived notions because I didn't understand why what happened was significant, and while we had reasonable certainty that what was happening with the babies under one year of age was unheard of, the first child to "spontaneously recovery / be formally misdiagnosed" could have been a complete coincidence.
And the parents were skeptical. I made life more difficult for myself by refusing to take any money from them, because parents of special needs children are already pushed to the breaking point (in my opinion) and since I couldn't promise *anything* except "look, this happened for this child when we did this, so let's try it again and see what happens, and please document any changes if you see any" it was crazy.
No one expected it to actually work. One could hope, but seriously, the first half dozen we lucked out and we had a range of children with different issues, but lucked into early 100% success. (That was cool, but the numbers dropped the larger the sample size got, and have stayed consistent at 83% or 4 out of 5.)
We measured "easy" things: change in appetite, weight/height, bowels, tone/strength, then added cognitive (!), speech/communication, sensory and energy. Quantifying "cognitive" was especially challenging, and I have 117 pages of detail on the speech/communication section alone.
I have *nothing* to gain from this endeavor. I receive no financial compensation of any sort, and all of my efforts are "volunteer". I am *not* interested in becoming a doctor, and I have kept "clean hands" from the manufacturers. All data - good and bad - is shared. Some of it breaks my heart; since my background is computers, I struggle with the 83% number because if it works like I *think* it works, then shouldn't it help everyone? But it doesn't, so that means there are still pieces of this puzzle missing.
My data is available to anyone who wants to look at it. I *welcome* inquiry. There is so much about this we just don't understand.
But I remain adamantly convinced that anyone who investigates is going to see what we have seen; if I didn't think it was important, I would move on with my life, because I am *busy* myself.
You can contact me, and I will share information / the sources for the conclusions. With over one hundred children seeing the same results, *somebody* should be looking to find out if what I am saying makes sense.
Bluntly, food matters. Really, at the end of the day, that is all I am saying. FOOD MATTERS.
Sigh.