On the serious side for a moment, I learned many important things in preparation for the next Big Project; a quantitative survey of the experience of doing BD versus commercial formula. Read on down for what YOU can do with 2 minutes of your time to help make this a total and awesome success.
But first, the news:
In a disturbing development, it seems that 16% of respondents are not sure whether they in fact have a giraffe. I mean, you'd notice, surely, wouldn't you? But it also seems that 11.1% of respondents do in fact report having a giraffe. This remains true if we filter for country of origin and look only at the USA. Logically then we can extrapolate that there are approximately 34 million giraffes resident in the United States.
See how careful you have to be with looking at stats? Obviously there are more giraffes than that. :-)
One thing I should have included was a free-text comment box for the question "Do you possess the answer to globalisation-induced poverty?" because 19% said Yes, and now we'll never know........
Of all the choices, the favourite method for preventing giraffes from eating the unripe coconuts was to "Tie a bell around the giraffes' necks so the coconuts can hear them coming and hide" Closely followed by "Don't be stupid. Everyone knows giraffes don't eat unripe coconuts. They always wait until they're ripe."
There were many very practical and imaginative solutions to this problem offered, one of my favourites being to first teach the giraffes to read, have them read the Bible and the Ten Commandments and place reminder notices up in the coconut palms saying stuff like "God is watching". Although I'm not sure if this is more or less humane than the electric fence option.
Unsurprisingly, stepping in giraffe poo in your bare feet while being distracted by the pretty ribbons the giraffes tie around the coconuts rates VERY HIGHLY on the annoyingness scale.
Useful stuff. Who knew?
The favourite colour option for repainting the Capitol Building is in 'all the colours of the rainbow' but in the free comments section beige made a very strong showing as did green. "Sage green to attract sages, not fools", "Green, the color of money, because that is all that any of the politicians working there care about." "Green, with little pictures of famous men for accent, just like all the $$$ they foolishly spend in that place.", "Green: because i'm hopeful about the eco thing sticking, but realize it's the allmighty dollar that sets the rules.", "neon green" and my favourite "Lime Green with purple trim - looks great in my daughters bedroom and cheers everyone up when they walk into her room." Who'd have thought there would be so much politics in colour??? Pretty much every colour combo was mentioned, including the creative purple, being a blend of red and blue. Nice.
75.9% of people do not know what a delicious Mangel-Wurzel is. And pretty much everyone loves potatoes.
There was a great response to the "Which vegetable would the Capitol building be and why?" question, but again...so much hilarious politicking! Gas-producing and otherwise stinky vegetables featured strongly, as did the Mangel-Wurzel because, in the words of a few "I don't know what it's for or what it does". Too much creativity to boil down here.
I used the free version of SurveyMonkey, and it's quite limited in terms of pulling reports and sharing data with y'all. But I shall be ponying up for the proper version and then can make all the coconutty and giraffey goodness available in a better form for you to examine fully (minus names etc, sorry, but they must stay confidential and then be destroyed once the data's all pulled). Then I can also find out the really nitty-gritty stuff like "of those who responded 'yes' to owning both giraffes and coconut plantations, how many thought the Capitol Building would be a vegetable from the brassica family?"
Because you can see how useful that will be to know.
OK, maybe not, but I will want to know answers to cross-referenced enquiries like "what percentage of those people who switched from formula to BD and had a decrease in reflux also reported greater volume tolerance?" This sort of thing may prove to be very interesting.
AND THIS IS WHERE YOU COME IN
I and my few motivated cohorts in the spearhead are already working away on your behalf on the survey construction and design. As per your responses just now it will be short enough to be completed in well under 20 minutes, yet long enough to catch a lot of really meaningful data. But the outcomes to be aimed at are the main thing.
I am appealing to you to give me your feedback on the following issues, to supplement the things we here in the vanguard have already compiled.
- What are the main objections you have been presented with by members of the medical profession, family, and others when considering BD?
- In simple or single words (eg reflux, vomiting) what are the greatest symptom improvements you experienced when making a change from commercial formula to BD?
- What were the main problems or worsening symptoms when changing?
Either pop a comment in below or email me with your thoughts, please. Comments might be better, because then others can see what you've written and it may inspire them to think of something too.
Thank you all, very much. The response was larger, faster, more creative and certainly a lot funnier than I had dared hope for. I look forward to the next step feeling well-supported and like we're about to do a very good thing. A first step to something which might change a lot in how we understand the BD experience across a wide range of people's experiences, and a powerful tool to help educate the medical community a little better, in a way they can only respect.
Objections: Sanitation (going to make him sick), too much work, won't know if he's getting all his nutrition, going to clog the tube, going to make him worse/sicker, if he can't digest elemental formula he can't digest food.
ReplyDeleteImprovements: Energy, vomiting, reflux, comfort, rate tolerance (bolus instead of continuous), health, growth, interest in food/eating.
Problems: Constipation, sleep issues.
Objections:
ReplyDeleteMoving from all breastmilk to a real food diet/BD will leave my son lacking protein and other key nutrients so I should replace some of my breastmilk with formula while I am switching to a totally food diet (what do other breast feeding moms do in the switch?? It just makes me crazy the things this dietitian came up with)
the surgeon gave me a lecture about how I shouldn't be putting anything but formula through a g-button becuase it will clog it and cause all sorts of problems. (He also said we have the best looking g-button stoma site he has ever seen)
Improvements and problems: I have never fed my 21 month old anything but breastmilk or real food BD, (he gets locally grown and/or organic food with milk and meat from animals in our area and has a close to perfect diet becuase he can't taste it) so I don't have any before and after comparisons. I may hazard to say that he had some possible reflux issues and volume on breastmilk and has not seemed to have any with the BD.
Objections from medical community: will be too much work, unsanitary and can clog tube, also difficult to measure calories and deliver complete nutrition. An almost exact quote was, "Why would you switch to real food when everything you need is in a can?"
ReplyDeleteIssues: To be somewhat delicate, we can refer to it as my daughter's "voiding" issues. One formula she was on made her constipated and we had to supplement her diet with a daily dose of Miralax ... and finding just the right dosage was a bit of trial and error. These issues also caused toilet training problems ... we even had several sessions with a behavioral psychologist to get her past it. Switching formulas (from Nutren Jr. to Compleat Pediatric) now caused the opposite issue ... loose stools and gas!
Also, despite "everything" being in that can, I don't believe all the vitamins were in a form my daughter's body could utilize, thus she was always pale and a blood test showed she was anemic.
Improvements: I immediately saw improvement in my daughter's skin tone ... she finally had color in her cheeks! And I'm awaiting the results of an iron-binding study to see if her iron levels have improved. And I'm happy to report that I flushed the rest of the Miralax down the drain and no longer give her Prevacid because I no longer feed her overnight in a horizontal position. She's doing great!
Leslie, mom to Tinka, 7 years old
Objections: Not enough calories, Won't know what she's getting, not enough nutrients, too much work
ReplyDeleteImprovements: Volume tollerance, rate tollerance, constipation, vommitting, interest in food
Problems: Can't use kangaroo pump, more challenging for vacations, initial weight loss
Objections: "wouldn't formula be easier?" "elemental formula is the only way we know he'll absorb the nutrients" (never mind the fact that he couldn't stop throwing up to absorb the formula)
ReplyDeleteImprovements: vomiting decreased then altogether stopped, he went from crying during feedings to clutching, hugging and asking for more syringes. :), able to increase calories by 500/day, more energy and better looking stool, absolved respiratory problems (retrospect these were caused by reflux, food allergies, or more likely both)
Problems: appears more time consuming (until you think about the clothes washing, carpet cleaning, and stress of vomiting multiple x's/day) so actually not a real problem
Objections: Why do you want to do it? She's (my mom)not going to get all of the nutrients she needs. Never mind that she was in a nursing home for two months with no food or other feedings at all.
ReplyDeleteImprovements: Overall better health...stronger, better color in her face, all of the hair she lost grew back, more stamina.
Problems: Four days a week, I have to feed mom before we leave for day care and my job and then again when we return home, plus a before bedtime snack; on Fri, Sat, Sun, I give her all her meals. It is very time consuming and the tube gets clogged easily if I don't blend really well. For me, it's worth it, because she looks so much better.
No doctor ever objected. Nor nurses during hospital stays or dieticians or hospital kitchen supervisors or...I guess I must seem so sure of myself and my convictions or I've handpicked a great team of medical care providers for Jacob. So far everyone has been very supportive.
ReplyDeleteImprovements would mostly be in Jacob's skin and hair, complexion, overall health and ability to fight bugs.
Problems: None really, aside from finding splatters in strange places. The only permanent clog we've had so far has been from Jacob's prevacid, not from his food.
Objections: The dietician has said "it is not Best Practice" ... I suppose that is to do with hospital policy. Another person, sorry cannot remember who, said it was "old fashioned" - referring to the fact that this is how they used to feed people with a tube before the enteral formulas were produced. Another person was worried for us, thinking about the extra hassle they imagine for us. Most people think it sounds like a great idea though!
ReplyDeleteImprovements: haven't switched over to full blended diet, but, when Josh is having blended food he shows much more interest in trying to swallow. (was/is unable to swallow well, from birth)
Problems: haven't noticed any so far, but, Josh has tolerated the ordinary enteral formula ok i think, transitioning fully to that from expressed breastmilk at age two years.
Objections: that's too hard. How do you know what she is getting? How do you measure it?
ReplyDeleteImprovements: I am rather proud to say she has never had a can of enteral formula. She moved straight from human milk to BD...against the advice of several...although now that we know of her allergies to corn and soy, I am even more grateful we have taken this route as there is not one single artificial human food which is not derived from those things.
Problems: food splatters in weird places. A little finagling while traveling. Regular moving bowels;-)
Great blog you havee
ReplyDelete