I think I figured out to help fix heart failure. I deserve an attagirl.

[IdaBriggs]

19. June 8, 2012. That was the day the world changed for me.

That was the day the 9-year old neighbor girl who was pretty much confined to a wheelchair, with a list of problems, who had never been able to use her hands to either feed herself or take care of her own bodily needs, proudly stood up for twenty minutes, bragged about her cognitive improvement (in six weeks she went from not being able to "remember" the alphabet to doing spelling tests), and showed me how she could wiggle her fingers. She had also gained six pounds in about six weeks.

I knew pretty much next to nothing about cerebral palsy - we had a 9-month old boy who was supposed to be a quadriplegic gain ten pounds and start walking in ten weeks the previous year, but the "experts" said he was misdiagnosed.

So I came to DU to ask; my preemies don't have these problems (which makes sense now) and finding someone with a dog in the fight (so to speak) who could explain what was happening, or if it was as significant as I *thought* it was seemed sensible. I posted, no one responded, and I got busy with the rest of the day. I came back to the thread to find all heck had broken loose, and one person in particular started a couple of meta threads about it. The concern was that I was going to take advantage of a vulnerable population by offering hope where there was none. Plus I obviously am not a doctor, so there was a contingent who were offended by the fact this wasn't coming from the medical community. The name calling was fierce, and I am a pathologically honest person. As I asked in one of the meta threads (when I was told what I was reporting was "impossible!&quot "who should I believe, you or my lying eyes?" (So glad I made the video - at sixteen weeks, her hands were completely normal!)

There was no question the neighbor was / is misdiagnosed. And the kids who are getting better - well, "breakthrough in understanding" is an understatement. I don't have all the answers - with 121 kids seeing improvement, I have 40 children who didn't, and that is very hard to deal with; I am an IT person, and while the medical folk assure me this is good (83%), in IT world, anything less than 100% equals failure.

I tell you this, because there are still hard feelings, and those convinced I was selling "snake oil" (:eyes became extremely ... hostile in their comments in an effort to protect people they thought I was trying to take advantage of. I even ended up putting one person on ignore due to her poor behavior, but truthfully, I owe her thanks: she explained a lot about the condition, and helped me to both understand the significance of what was happening and the wall of resistance explaining the findings was going to entail dealing with. Ignoring her is probably still the best way to go, but part of me wants to let her know she helped a lot of children in a peripheral way.

I shouldn't have lost my temper earlier, but as I said, sometimes venting on the Internet is the way to go. I am human. I appreciate the support. And I apologize if my rant made this thread unpleasant. I think this will have significance in other areas than neuromuscular, and turning things on/off (like the ability to process cholesterol) based on what we put into our bodies seems extremely exciting to me.