[tri-med] Re: Nestle Additions/Weight Gain-Ann

----- Original Message ----- 
From: "Pamela Padgett"
>> I am going to ask that her thyroid or metabolism be checked into also.

Hi Pamela,
I am pulling up the rear on this and I apologise.
I can't add much to what everyone else has said except to share our
experience, which is slightly different but similar.

Firstly though, make sure that they are checking her weight to height not
weight to age. You are right in that so many of our kids are small for their
age and thats in their genes. Feeding our kids more will not necessarily
make them grow.

That said Alex is not typical of T-18'ers and he has grown with additional
calories, and it was the reason that he got his g-tube. Weight wise he
tracked on his own curve just below the 3rd centile, then at 14 months he
got his g-tube at my insistence (the big difference between our situations)
I did however agonise over the decision because as an OT it went against the
grain to go "backwards" with a g-tube when he "could" eat orally and
maintain his weight gain curve.

That said however, logic intervened for us. Alex "could" eat but it was so
slow and painful and I wasn't convinced that the doctors were right in that
he was "meant" to be small (we didn't know about the T-18 or I probably
would have accepted that). So my decision to go with a g-tube was based on
three primary reasons
1. Development - he was spending so much time in a high chair being fed that
he was missing out on development time. OK Eating is part of development but
there is so much more in life than eating (I am an eat to live person not a
live to eat :-))

2. Growth - you need adequate nutrition AND calories for brain growth not
just linear growth. And the brain is mainly made up of fatty bi-products.
The body takes what it needs for organs before growth and so my strange
logic said that while he was gaining he should have a little extra "weight"
(that is a roll or two) before I could be sure that his brain was getting
enough. Alex was the proverbial string bean so I wasn't sure he was getting
enough.

3. Sanity - sounds strange but I was getting so stressed out with his
feeding that I was going even more nuts than normal. Something his ped
attested to when he saw what we went through each meal to maintain his
weight and slight growth.

I didn't want to try an NG tube because its not good for apneas (an NG tube
can encourage apnea's) and its not great for later speech and eating
development (leaves scar tissue and a residual distaste for oral eating)

So Alex got his g-tube at 14 months and he just lept forward and went in the
following 12 months from being below the third centile to normal and now,
even though he doesn't use the g-tube (its still there just not used) he is
in the 97th centile or above for his age, and on par with weight for height.

He was totally g-tube dependent for about 3 1/2 to 4 years but then he
decided that he wanted to eat again and so he started to eat. He is still
the fussiest eater under the sun and I am seriously considering starting
back to using the g-tube for nutritional supplements at the moment. Alex
hasn't used his g-tube for about 3 years now for anything except meds. ALEX
is the one that wont have it taken out. Its a part of him and he gets very
distressed at the thought of it being removed. Its as if I am asking him to
chop off an arm or a leg and I guess to him I am. So it stays. It is handy
when he is very sick though I do admit, certainly saves an IV.

With regards to some of your other concerns -
We also got the too much protein being a strain on the kidneys spiel. I
never used pediasure until Alex became an oral eater again - instead I fed
him a regular toddler diet through the g-tube (difficult but do-able) and of
course for calories it was very high in protein (meat, milk, cheese etc) I
was even so bad that I made up his pediaure on milk instead of water (we get
powdered pediasure here not premade like in the US)

Remind them however that the keto diet is also very high in protein (a low
carb diet for seizure control) and most kids survive without kidney problems
on it. Also they can test to see if the kidneys are being strained by the
high protein diet. When they tested Alex (trying to convince me to stop the
food through the g-tube and go back to formula) they found Alex's kidneys
were coping just fine.

As for testing metabolism a couple of things to consider other than just
thyroid are
Growth Hormone Deficiency - GHD can make kids small and it usually keeps
their weight right down as well. If they do test for GHD make sure they do
the long stress test not just the short one. (the short test can give a
false negative)

Hypoglycemia - Alex also has an ideopathic substrate deficiency
hypoglycemia - which simply says that he cannot convert stored sugar from
the liver into blood glucose which is what the brain and body needs a ready
supply of. This also kept his weight right down. If it is hypoglycemia its
easily managed and once you know how to feed and what to feed when it helps
get the weight on. Simplified the diet is small complex carb meals every
three hours.

I guess also I should add that as a therapist and neurotic mother I am
concerned that you are limiting Genevieve's activities to conserve calories.
I did the same in some ways, but mainly with regards to crying. I hated to
see him crying because it burnt up so many calories - plus he needed to cry
because of his lungs and also the apneas. (crying is actually good for you
believe it or not)

Have they tried polyjoule? I think its called polycal or something in the US
(help me out all you Americans please) If she is getting enough
nutritionally then polyjoule could help calorie wise. Alex was on it for
ages and lots of it. In short it is a man made sugar, but it doesn't taste
sweet. It tastes like nothing actually, has no flavour at all. We got it in
powdered form and simply made it up into a liquid or sprinkled it by the
teaspoon full over his food (depending on whether he could tolerate the bulk
of the liquid). There is something like 34 calories per teaspoon, its
definitely not a protein and not a fat. One side benefit is that being a
sugar it also helps with constipation (in fact overdose on it and you get
the runs)

So no new great words of wisdom - just a different perspective :-)

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