So far, there is much that is unsurprising to me, and seems to confirm much of what the common talk has been saying since I've been involved online the last year and a half. A few things are popping up though, like exactly how many people use a very high percentage of unprocessed or whole foods in their blends, and the fact that across the board doing BD seems to be more expensive than using the subject's previous forms of nutrition. Hmm.
What was unexpected for me was how emotional - teary is the right word actually - I became reading through scores and scores of comments about what incredible things people have experienced on their journeys. How a return to simple food has in so many cases proved to be such a major turning point in health and happiness. Something about a long, long list of such moments really can make your heart glad. I am a very lucky guy to have accidentally got a list of such good news stories.
And of course, redacted for any identifying info (not much there anyway) I'll share it all with you when we're done.
Anyway, data-wise the *really* interesting stuff will come when I can close off the survey (I'll leave it a week or so yet,there are clearly a few who did not manage to quite complete it so far at least) and cross-reference stuff. You know, of people who reported significant reflux prior to incorporating BD, looking at how that matches with what nutrition source they were using. Correlating improvements in gastroparesis since BD between those with a high wholefood content versus a lower wholefood content, and those who do or don't receive free water....tasty stuff for nerds, yes?
The data set is approaching a size where such results can be statistically meaningful. But, and you saw this coming, we really want more.
I think if everyone makes the effort to reach out to those few people you think mightn't have done the survey yet and jolly them along a little, we can get another 50 or so this week coming. This can be done. Just this last 48 hours I have seen an awesome display of people power and passion in a very related way. Let's harness some of that to help this great tool for the future of every person with a tube that much better!
Here it is for those who need it:
http://www.surveymonkey.com/s/bdexperience
Cheers, all, yay team!
Just my two cents worth of context, but I was one who noted that BD was more expensive. I didn't see an opportunity to explain (though could very well have missed it), but we did not pay for Harmony's formula before. We got it through WIC (the state pays for it). So our scale of "more expensive" is based on a starting point of "free". I'm guessing what it currently costs me is simliar to if she were eating orally. Well, maybe cheaper because I'm not buying her the processed junk food I see all my friends buying their kids :)
ReplyDeleteInteresting results so far!
ReplyDeleteI'd bet (as is our case) that it's more expensive to do BD than formula because for tube-fed kids in the US insurance (private or medicaid) will often pick up at least a chunk of the cost of the formula. Once you go to BD you're on your own. So that makes total sense to me.
Re: the cost of BD, yes, I know exactly what you're saying. I was interested in the actual out-of-pocket expenses (after insurances etc) to allow for differences in state/country systems, rather than a more general 'cost' like cost to the country, or the taxpayers,or the body of insured customers etc. But thanks so much for your feedback! There will be soooo much to discuss on this. I'm a little excited.
ReplyDeleteYup,in the UK the NHS picks up the cost of formula feeding. It is a tad more expensive than the standard diet I feed my other children but thats because of the extras I am using like double cream ,rice milk,nut oils,agave syrup,linseeds to get the most calories/nutrition into a small volume.
ReplyDeleteLouise
I am just busting to take the results to every single medical professional I can get hold of that promotes formula as 'the only way' to give tube fed children nutrition!!! My dietitian will be the first stop! I might even deliver the results tied to a brick through her lounge window!! hehehe Although probably a mature adult discussion would suffice!!haha Awesome work Eric!!
ReplyDeleteThrow the brick for all of us Eric!!
ReplyDelete