[tri-med] Re: Good food questions

----- Original Message ----- 
From: "Kraig Warnemuende"
> I've been thinking about trying to get Keren onto some other foods via
> the g-tube.  I think my biggest question (since I've not had any other
> kids yet) is how do you know how much to feed them--i.e. amounts,
> nutrients, enough fluids, etc.?

When I did this 8 years ago it was very unaccepted by dieticians and the
like, so I was very much going against the mainstream. Dieticians wouldn't
even acknowledge what I was doing, let alone recommend anything. So for me
it was all trial and error. These days however I understand that some
dieticians hae taken the advice we all gave and come up with a food
"formula". I know the recipe has been posted on the OK list a few times and
I can search through the archives for it if you want - though it may be
quicker if you do :-)) ( http://www.our-kids.org/ )

For me however I simply replaced the tube feedings with a "normal" toddler
diet. I started the same way you start on solids - one food at a time and
nothing new for 3 days after you start a new food (for allergies and
intolerences)

So the first "food" Alex started on was cereal. I simply mixed a little
farax (rice cereal) with his formula and then put that through his g-tube.
Alex was extremely volume sensitive so yes it was done as a bolus, but as a
slow push bolus. By that I mean I did not thin it so much that it would
gravity feed, rather I just thinned it enough that I could push it with the
syringe through the tube. That consistency was like a very thick custard, or
guacamoli (or however you spell that avacodo dip thing)

Is it a ton more work to do it this
> way than just using formula--I know, we always look for the easy way
> out, huh?

Definitely a lot more work!!! Once you work up to vegetables and meat it has
to be strained. Straining it meant that I would have to push it through a
fine metal sieve, but my other kids are a lot older and we always did that
when they started solids anyway. Tinned baby foods 20+ years ago were a
luxury and considered not healthy (given the special on prepared baby foods
I watched a little while ago we were probably right!!!)

Once we had worked up to a full diet I would cook a huge pot of stew. So
meat, vegetables and a little water (or V-8 juice) cooked up in a big pot. I
would cook the meat first and cook it a long time so that it would "rag".
Alternatively I would buy mince. I would choose the cut at the butchers,
then get him to triple mince it for me (thats just putting the same meat
through his mincer three times). Once cooked I would put it through the
blender and puree it. Then I would strain it through the sieve into old baby
food jars or plastic containers and freeze them.

When I wanted to use them I would simply thaw or heat them, place the food
into a plastic bowl and thin it to the right consistency with milk, juice
(orange or pear usually for constipation issues), V-8 juice or water.

A tip, meat is hard on blenders :-) Some people use juicers, I didn't mainly
because juices were hard to come by back then here in Aus, but also because
juicers leave the pulp behind and I believe there are a lot of nutrients in
that pulp, not to mention that the pulp is good for constipation.

But there wouldn't need to be as much given, would there--I
> mean volume.

Yes and no - depends on how much you thin it. You do need to check residuals
in the early days. Solid food digests slower, especially if their tummies
are not used to it. Early on I used to weigh and count calories. The US
government has a great web site where you type in the food and it gives you
the calorie value of a food as well as the vitamin and mineral content. If
you want to be pedantic you could sit there and work it out.

Alex's dietician tried everything to convince me that it I was doing the
wrong thing and analyzed his diet. The only thing she could find was that it
was a very high protein diet (lots of meats and milk) which can put a strain
on the kidneys (just as concentrating formula can). A blood test however
confirmed that his kidneys were coping fine. Then she tried to tell me that
I was over feeding Alex. She reasoned that while Alex was having an ideal
toddler diet most toddlers don't - they refuse food and have a lot more
breads and junk food than Alex had. Which was true. Alex had meat and
vegetables for lunch whereas toddlers would have a sandwich (bread doesn't
puree well!!!!) or chips etc.

I countered that Alex was thriving, healthy and definitely not overweight. A
fact that she couldn't dispute. His reflux was also better (thicker foods
reduce reflux significantly) plus his blood sugars were a lot more stable on
food than they were on formula which has a low glycemic index.

Eventually she stopped bugging me about what I did and over the last 8 years
its become a lot more acceptable to tube real food. You have to remember
though that the g-tube makers and the people who manufacture formula have a
vested interest in us NOT feeding real foods but using their manufactured
formulas. I don't know that pediasure and the like are "bad", but I do feel
a lot more comfortable feeding my child "natural" foods than manufactured
chemicals.

>>Also, I'm assuming this was fed
> to him boulos?

As I said it was usually a slow push bolus. I worked out that a child would
usually take 20 - 30 minutes to eat a meal. So I would sit down and read or
play with Alex for the duration of the meal and just depress the plunger 5cc
every now and again (working on the premise that a child usually eats a
spoonful, or 5cc at a time). Eventually it got to the stage where I would
just draw up the food and Alex would feed himself. He used to just squirt a
whole 50 or 60 cc in as fast as it would go. I figured if he was comfortable
with that it must have been OK.

Some people I have met do thin it enough to gravity feed or use a pump. Alex
was too volume sensitive for that.

The only other thing is to make sure that you flush really well after each
feed to make sure there is no food left sitting in the button.

Hope that helps

We can not change the wind. But we can change the sails.
~Ghandi~

Keep Looking For Rainbows!!
   _--_|\
 /Karen \
 \ _.--._ /
          v Karen, Mum to Alex (8 years, T-18 Mosaic)
http://members.optushome.com.au/karens


We can not change the wind. But we can change the sails.
~Ghandi~

Keep Looking For Rainbows!!
   _--_|\
 /Karen \
 \ _.--._ /
          v Karen, Mum to Alex (8 years, T-18 Mosaic)
http://members.optushome.com.au/karens


                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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