November 30, 2010

Joleanna's simple breakfast for Demetri

This is a simple, basic, standard-ratio breakfast blend:

1/3 cup dry Quinoa flakes cooked for 90 sec. in 1/2 cup water
1 tsp oil
1 tsp honey
1 kiwi
3 ounces whole non-homogenized milk

makes 8 ounces
approximately 320 calories, 9 grams of protein and fat. (pediasure 8 oz: 237
cal, 7.1 g protein, 9.4 g fat)
I compare my blends to pedisure only to appease physicians and honestly it does
give me a good cal/protein/fat ratio b/c he is sensitive to fat overload
so about 40 cal/ounce if my figures are correct. it was very thin so may go
through continuous feeds, not sure though b/c i gave it via syringes.
lol, and yes i'm the one who pre-fills or draws up all the syringes ahead of
time. it seems to make it easier for the grandmum's when they watch him.

November 29, 2010

The Results: and I Would Like Your Ideas Please

The results of the Inaugural Giraffe and Coconut Survey are in, and I am most pleased with how it all went.

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 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.


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.


November 21, 2010

I'm excited: New Survey Trial

I'm excited.  I'm hooking up with some other equally motivated folks to use the awesome power of internet data collection to do something that's missing from the whole Blenderized Diet oeuvre.  A proper, wide-ranging study of people's experiences and evidence about the differences between feeding with canned formula and feeding with actual food.

To that end, I'm testing some online survey software - the cheap-ass free version, sure, but a useful start - and I want you to take the survey please.  It'll take 5 minutes.  You'll like it, I promise.

Hopefully, this link will work.  thanks!

Click here to take survey


November 18, 2010

A Weighty Issue

One thing that so often crops up for people switching from canned formula to a food diet is the conundrum of weight loss/weight gain.  There is always some fear in change, and so many of us are conditioned to trust medical professionals' knowledge in all areas they choose to speak on; and to trust 'scientifically' determined ratios and amounts of calories, nutrients and so on that it can be hard to leap out of that way of thinking.  The need we so often have to be as in control of an out-of-control situation as we can (like a loved one's health) can cause us to lock us into a search for absolutes, for rules, for prognosis: "If I do X, will Y happen, and when?"

But of course nature, of which we are all a part (and we forget this sometimes too, that we are animals in an environment) does just not work this way.  Furthermore, we are all so very different.  We each respond to various formulae, and foods, differently too.  This is why prediction, prescription, growth and weight charts, calorie plans and the like are guidelines to start with at best; frightening, irrelevant and wrong for us at worst.  The best way forward always ends up being from our direct experience.

All that being said, there are some recurring themes that seem to crop up with a switch from formula to BD when it comes to the issue of weight.

Something that really gets my goat* is the habit of modern medicine to create bogus 'diagnostic' terms that really just medicalise something simple and obvious, as if by giving it a fancy, formal-sounding acronymic name some power can be achieved over it.  One such term that gives me the screaming willies** is Failure To Thrive (FTT).  It is NOT a diagnosis, any more than GERD is. It is a shorthand pointer to a description of some of a set of symptoms, that is all.  In FTT's case, it means 'not growing so well'.  So many parents whose child is 'diagnosed' with FTT have all sorts of fear put into them about caloric values and density and have a hard time even considering a way out of the formula can as a result.  Partly perhaps because one of the 'scare stories' is true some of the time at least:

Kids and adults alike can often lose weight initially when switching from canned formula to food.

So why might that be?

The most commonly presented answer points at the 'empty calorie' syndrome.  This is where despite being perhaps 'underweight' by standard measures, someone is carrying excess unhealthy fatty tissues just pumped up by the very high relative percentage of refined carbohydrates (sugars) present in canned formulae.  The body can only use or process and excrete so much of the caloric value put in because there's just too much of the one kind of caloric substance so it stores it.  As soon as the topping-up is stopped (no more formula going in) the body starts to rid itself of its toxic and unhealthy burden and switch into a different mode of assimilating nutrients.  The same thing is seen with really high-fat diets.  Our modern obesity epidemic really has two main causes - simple overeating and the composition of what we kid ourselves is food.  Many would be surprised just how much fat and sugar there is in the most innocent-seeming processed foods.

Lots of parents experiencing this will say that the child in question is technically losing weight, but is visibly less 'puffy', and developing a healthier colour.  And the thing is, it rarely seems to last very long - a couple of weeks generally before the turnaround begins.

Another possible answer is that it's just a change thing.  If you've been on formula for a while then your body gets used to it - even if there's all sorts of intolerance, vomiting, diarrhea and the whole catastrophe going on.  We are amazingly adaptable survivors and can extract sustenance when we really have to, even when it's mixed in with something that is poison to us.  So it can take a while for the body to adapt (or re-adapt) to digesting new things.  During this time some weight may be shed.

A third good reason I've heard posited is that there's a whole new lease on life going on and since feeling suddenly so much better, increased activity is just burning up all the excess calories!  I know this was part of what happened for me.  I went from gaining a little weight to a plateau and then a loss as I upped the BD but then I thought back and realised I was actually doing things I previously had not had the energy to do.

There must be other theories (please share!) but what it comes down to is that that there's a pretty common observable scenario where people making the switch lose, then gain.

So what I'm saying is, DON'T PANIC!  Of course, you must be sensible.  But a little weight loss in and of itself is not a major cause for concern.  You may feel stuck in a cleft stick - the docs say "OK, try BD, but if there's no weight gain in a month it's back to Evilvomitformula 1.5***" or your child may be at a very low baseline already and you're scared to let it go too far.  It could be of some reassurance to know that in almost every case, the turnaround to a nice steadyish weight gain happens quite quickly.

But weight, there's more! (haha)

Sometimes quite the opposite happens and this can be a bit off-putting too.  Occasionally there's a rapid weight gain, one not also associated with a length or skeletal growth.  This is not entirely desirable, but it's generally an easy fix - less food or less calorie-dense food.  Quite often in these cases it seems that the formula simply didn't absorb well, but natural food does.  And the body is hungry for nutrition and just goes mad for it.

I'll round this out by briefly returning to the subjects of FTT and weight charts.  Too often now I've heard of children who may have been preemies (we call them premmies here in Oz btw, just a pronunciation thing) or are otherwise 'small' for their age - 'adjusted' or otherwise - being measured and judged according to some standard weight/age chart, being pumped up on synthetic empty calories, and then discovering they're carrying too much weight for their bones and organs to handle.  Please remember, height and weight charts are just things made up from measurements of regular, non-special-needs folks, to find some average, and then they have a standard statistical spread applied.  Everyone's different.  Of course, if you or your loved one is an outlier on the charts then it's worth having a closer look - but it's not necessarily a problem at all.

Our human instincts are king here.  Look, feel, all the rest.  You know what's a good weight and what's not.  You have your own special chart and that of your loved ones in your head the whole time.  Trust them, and be sensible.  That is all.

*Not literally, of course.  I don't have a goat.  But I love goats and if I had one I wouldn't let anything 'get' it.
**Again, mostly not literally.  I prefer my willies a lot calmer and composed.
***Evilvomitformula1.5 may not actually exist.  Or it may.


November 14, 2010

To Nissen Or Not To Nissen

Just yesterday I started writing on the subject of Nissen Fundoplications and the prevalence in many communities of surgical options being pushed on kids with different gastric difficulties.  Then, in response to the topic coming up on the BD forum, the typically excellent and educative Kristina Blizzard had this to say - well put and coming from  experience.  Food for thought indeed.  

Here's Kristina............

"For what it is worth, here is my two cents worth on Fundoplication (Nissen)
surgery in general:

Before starting the blended diet, and eliminating formula, we were told many times my daughter needed a G tube. One of the reasons I was so against the idea was because I was told that most doctors would want to do a Nissen (Fundoplication) as well, due to her projectile vomiting, which she did 3 - 6 times every day. I was told doctors in my area were routinely doing a Nissen when placing a G tube. I believe the complication rate was high enough that they no longer do them routinely.

I asked the nurse at the Cincinnati Aerodigestive Feeding Clinic, what the complication rate was for a Nissen. She said it is about 30%, which seems really high to me. Part of the problem with that surgery is that it is subjective. What I mean by that is the doctor has to decided how tight to make the Nissen. If it
is made too tight, solid food will not be able to enter the stomach easily, and you get gagging, wretching, etc. If it is made too loose, the patient will continue to reflux/vomit/possibly aspirate. There is also the possibility of causing nerve damage that can contribute to the wretching issue.

For those of you who don't know, when they do a Nissen, they basically pull the top part of the stomach up around the bottom of the esophagus, and sew it in place, with the intent of creating a one way valve. Hopefully food can go in, but not back up in the form of reflux or vomiting. This surgery does reduce the
volume capacity of the stomach, which can become an issue, especially for those who already had low volume tolerance to begin with.

In a person with aspiration issues, doing a Nissen can be life saving. There are people who have had the surgery, and have done very well afterwards. Those people are very happy they did it, but don't tend to be nearly as vocal about the surgery as the people who have complications from it.

Sadly, for some people, the Nissen causes more trouble than it solves. Those who are sorry they did it, feel (perhaps quite rightly) compelled to warn everyone of the negative possibilities. I think that is why most of what I hear about Nissen surgery is negative, and often pretty scary.

I think used very judiciously, Nissen surgery can be a good thing, like I said before, life saving in some people. Where I get concerned though, is that often there is not enough investigation of the cause of the reflux/vomiting/oral aversion prior to surgery. I am afraid surgery is sometimes being used to treat
symptoms, instead of identifying the cause of the symptoms. Vomiting/reflux/oral aversion can have many causes, but just be very sure to eliminate food allergy/intolerance as the cause BEFORE you have surgery.

And no, just trying someone on Elecare or a similar formula is not considered a sufficient investigation in my book. Not everyone tolerates Elecare despite what the doctors say, it CAN cause issues. I know several kids who couldn't tolerate it at all. I think it should be a criminal offense to alter someones anatomy
like that without first doing an elimination diet to rule out food allergy/intolerance issues.

If you are thinking, what about allergy testing? It is often not reliable either. (A topic for another post perhaps.) In my opinion, an elimination diet is really the only way to know for sure what someone can tolerate.

The medical community doesn't as yet have a very good understanding of the many interactions between food, and the digestive system. They know even less about the role of the immune system in reactions to food.

If it wasn't for me finding the blended diet, and starting my daughter on a hypoallergenic blend, she would have had surgery. It was scheduled for two days later, but she did so well on the hypoallergenic blend I made her, I was able to cancel the surgery.

I had been told repeatedly, her vomiting was a result of her brain injury, and something we would just have to live with. Once I figured out everything she doesn't tolerate, her vomiting went away. Her oral aversion is gone now, but she still has texture issues, probably because her esophagus doesn't contract well. With blended diet, my daughter, is now able to happily, comfortably and independently meet her calorie & nutritional needs, something I consider miraculous when thinking about where we were back in Sept 2009.

So my word to the wise, unless it is life threatening, don't do surgery for reflux/vomiting/oral aversion without first trying an elimination diet to rule out allergy/intolerance as the cause. Maybe you will get lucky and not need the surgery at all."


Retired ICU RN, BSN

Mother to Morgan, 3 years old, former 26 week micro preemie with a bilateral
grade 4 brain bleed, cognitive delay, communication disorder, mild cortical
visual impairment and feeding disorder. She takes her blends orally, in her

November 1, 2010

In small praise of homegrown.

First, let me say thanks to all you readers and lurkers out there.  This blog's pageviews continue to climb steadily and are coming from all around the globe.  This can only mean that it's helping to do some good somehow, and that people are sharing it with others.  That's great, it's what it's all about.  Almost as gratifying, I've been made aware that there's a creeping, growing awareness of this site in medico-land, with a number of dietitians and nutrition program managers and the like telling me that it's one of the main resources they direct new tuberfolk to.  So please folk, keep your input a-comin; people need us, and love what's going on!

That said, here's a picture.

Those of you who read my other blog will know I moved house last year and have faced a number of challenges getting the garden up and running.  It's spring here, and despite the difficulties I've had my first little harvest.  Oh, and that isn't some weird mold on the broad beans, it's frost - I harvested them the day before, blanched and froze them in portion sizes.   Yes, I trimmed and cooked the artichokes (only two of them, my wife had the other and another besides) but the herbs (coriander and mint in this batch) and everything else went in as is.  The blend, if you're interested (usual memory disclaimer and apologies for my non-measuring system as always), was:

Walnuts, a large handful
Quinoa, uncooked, maybe a cup
Sesame seeds, a short pouring
Two artichokes
Double handful broadbeans (fava beans, same thing)
Strawberries, just four gorgeous little ones
Coriander (cilantro)
Sweet potato, two smallish orange ones
Banana, one of
Dark agave syrup, a few tablespoons probably
local EV olive oil, lots more than you'd normally think was good for you
garlic-infused olive oil (really STRONG too, yum) just a bit
cardamom, ginger, turmeric, all dried and ground, about a teaspoon each
organic oat and honey milk, 1 litre
carrot and orange juice, to top up and thin just enough.

This all made just under 3 litres, so I split in into 7 feeds of roughly 400mls.  And I have to say, it smells just divine.  Juuuust thin enough to gravity-feed via syringe body.

So the real question is, what's with the strawberries?

Yes, there were only four little ones.  They were the vanguard of our strawberry pots production and all that was available on the day - so why bother at all?  Because it's about the connection.  The link between the (organic) way we grow food, the soil and air and water and sunshine we help along with our designs and efforts to make food, and with my inner self - in all senses of that term.

In gross terms, four strawberries isn't going to amount to much in 3 litres of tubefood, but the energy (for want of a less New Age term) is really important.  The blend above is a celebration of the season, and how it is at my home.  This sort of stuff I believe is every bit as important to our whole-person health than just a calorie and mineral count.  You'll know by now I'm not a rampaging ideologue on the 'anything less than permacultured organic local produce is contributing to the death of the planet and will probably give you cancer' bandwagon, but there's no doubt in my mind that food made as close to us as possible, by our own efforts if possible, in as much of a naturalistic way as possible, will trump every other conceivable form of fuel intake available to us - in the way it supports us individually, and as a collective of people on a fragile world.

Tubefeeding in some ways has given me a keener appreciation of the feel of food than I ever had before.

So I'd just like to take a moment to express my gratitude that I can in a small way help nature make food for me and my wife, and encourage everyone to remember that it isn't an all-or-nothing sort of thing to do.  Just a little pot of herbs on a windowsill, a sprinkling of homegrown, natural parsley on top of your dinner, makes such an immense difference to how the whole meal and mealtime feels.  Connection.  And if you happen to be tubefed, it's really all the easier.

I mean.......seriously, would you EAT all that together?