Re: High Cholesterol & Weight Gain (Beth)

[Guest guest]

Hi Beth,

Thanks for responding. condition seems to be more complicated than

your daughter. He is continually g-tube fed, and suffers from an oral

aversion, and severe hypo-g. Depending on activity levels, 's BS can

drop 30-40 points within 30 minutes off feeds. His is an asthmatic, with RAD

and severe scarring of the lungs from an RSV infection. He takes Singulair

for the asthma, and does nebulizer treatments to help keep his lungs open.

He is on Zantac and Prevacid for reflux. He's had several severe ear

infections, and just had tubes placed yesterday.

He recently started accepting enough Stage 2 baby foods to lower his pump

feed rates for the first time, but most " other " foods or textures aren't

acceptable to him. He's never felt " hunger " as far as we can tell. He eats

because he's been conditioned to do so, but he only eats what he wants.

There is no forcing " correct " foods for any oral feeding regimen down him.

If he doesn't want it, it won't go in his mouth, no matter how much you try.

I am very interested in introducing to healthier, more diabetic-type

foods because he's insulin resistant, and with the back up of the g-tube, we

have time to work with him. Time to shape his tastes towards foods that

would be healthier for him in the long run. But I don't understand how this

food regimen would work for him. He eats NO meats whatsoever, NO veggies

unless pureed, same for fruits. As far as table food, he'll only do those

things that have certain textures, and those are mainly carbs, French fries,

White bread (no whole grains)Cheerios, Fruit Loops, crackers, chips. He has

SID so there are numerous textures that he won't touch (meaning they won't

make it into his mouth either), or that make him gag.

What would your suggestions be?

Pat (g-ma to , RSS, 3 yrs old, 23.5# (10.7kg), 32.8 " (83.3cm),

G-Tube)

[Guest guest]

Pat & Beth,

I have to admit I have only skimmed all the long articles Beth has been posting,

because I

also thought it would be impossible to tackle this issue with a kid like mine.

Then, I read

your post, Pat. is a younger version of in many ways. The good

news is

that has come a long way in terms of his respiratory issues. I think

time is an

important factor. wore oxygen for 2.5 years and did all the nebulizer

treatments,

meds, etc. Now, we only use the nebulizer when he gets sick. He, too, has

sensory

integration issues, which have improved somewhat over the years. He used to

retch,

throw up, sweat, and need more oxygen at the sight of anything which appeared

gross to

him (which was basically everything). When I started looking around for

preschools, I'll

never forget his reaction to a little girl who came up to him covered in cookie

dough from

working on a classroom project. He freaked out & threw up - good first

impression, huh?

Getting back to the diet issues - I wondered how you could control carbohydrate

consumption with a kid who gets essentially 95-100% of his calories via g-tube.

We have

only tried feeding him pureed foods through his tube once, and it was a

disaster. The

food wouldn't go down, and then when it finally did, the tube got clogged.

now

has the ability to eat some foods, but even when he is willing to eat, it is not

the norm in

terms of quantity (he is FAR from being able to consume the calories he would

need to

sustain himself), quality (he does not chew or swallow correctly), and time (it

takes him

forever to consume even a small portion). This is after YEARS of therapy,

including

attendance at a 2-week feeding program 2.5 years ago. By the way, guess what

the main

diet was at the feeding program - all carbs! The justification was that

cookies, crackers,

and other snacks such as these are great for biting & chewing practice as well

as exposure

to different textures (some melt in the mouth, others are more work to get down,

etc.

I think I have come to accept what he is willing and able to do in terms of

eating even if

that means he will never get rid of his g-tube. I have strong feelings of guilt

when it

comes to all the years we spent basically torturing him with food. He is 11

now, and I am

hoping that at some point when he is older & when peer pressure becomes an

issue, this

will be more motivating for him to get rid of his g-tube. He wore the Zevex

mini-

backpack for the first time to school today. Prior to this, he only used the

g-tube at night.

I don't know, nor do I fully understand, whether he has blood sugar issues, but

I have

noticed that his behavior has been exceptional today. I don't know if this is

just a

coincidence or if it is related to being fed continuously today, but I'll take

whatever I can

get!

Kim C.

> Hi Beth,

>

> Thanks for responding. condition seems to be more complicated than

> your daughter. He is continually g-tube fed, and suffers from an oral

> aversion, and severe hypo-g. Depending on activity levels, 's BS can

> drop 30-40 points within 30 minutes off feeds. His is an asthmatic, with RAD

> and severe scarring of the lungs from an RSV infection. He takes Singulair

> for the asthma, and does nebulizer treatments to help keep his lungs open.

> He is on Zantac and Prevacid for reflux. He's had several severe ear

> infections, and just had tubes placed yesterday.

>

> He recently started accepting enough Stage 2 baby foods to lower his pump

> feed rates for the first time, but most " other " foods or textures aren't

> acceptable to him. He's never felt " hunger " as far as we can tell. He eats

> because he's been conditioned to do so, but he only eats what he wants.

> There is no forcing " correct " foods for any oral feeding regimen down him.

> If he doesn't want it, it won't go in his mouth, no matter how much you try.

>

> I am very interested in introducing to healthier, more diabetic-type

> foods because he's insulin resistant, and with the back up of the g-tube, we

> have time to work with him. Time to shape his tastes towards foods that

> would be healthier for him in the long run. But I don't understand how this

> food regimen would work for him. He eats NO meats whatsoever, NO veggies

> unless pureed, same for fruits. As far as table food, he'll only do those

> things that have certain textures, and those are mainly carbs, French fries,

> White bread (no whole grains)Cheerios, Fruit Loops, crackers, chips. He has

> SID so there are numerous textures that he won't touch (meaning they won't

> make it into his mouth either), or that make him gag.

>

> What would your suggestions be?

>

> Pat (g-ma to , RSS, 3 yrs old, 23.5# (10.7kg), 32.8 " (83.3cm),

> G-Tube)

[Guest guest]

Hi Kim,

I am not overly familiar with G-tubes since never needed

one. Is it that the tube diameter is too small for the texture of

protein? Do all G-tube kids only eat carbohydrates because of this

problem? I assume they must eat some protein via the mouth.

Interesting comments about the 2 week therapy program being all

simple carbohydrates.

Beth

>

> Pat & Beth,

>

> I have to admit I have only skimmed all the long articles Beth has

been posting, because I

> also thought it would be impossible to tackle this issue with a

kid like mine. Then, I read

> your post, Pat. is a younger version of in many

ways. The good news is

> that has come a long way in terms of his respiratory

issues. I think time is an

> important factor. wore oxygen for 2.5 years and did all

the nebulizer treatments,

> meds, etc. Now, we only use the nebulizer when he gets sick. He,

too, has sensory

> integration issues, which have improved somewhat over the years.

He used to retch,

> throw up, sweat, and need more oxygen at the sight of anything

which appeared gross to

> him (which was basically everything). When I started looking

around for preschools, I'll

> never forget his reaction to a little girl who came up to him

covered in cookie dough from

> working on a classroom project. He freaked out & threw up - good

first impression, huh?

>

> Getting back to the diet issues - I wondered how you could control

carbohydrate

> consumption with a kid who gets essentially 95-100% of his

calories via g-tube. We have

> only tried feeding him pureed foods through his tube once, and it

was a disaster. The

> food wouldn't go down, and then when it finally did, the tube got

clogged. now

> has the ability to eat some foods, but even when he is willing to

eat, it is not the norm in

> terms of quantity (he is FAR from being able to consume the

calories he would need to

> sustain himself), quality (he does not chew or swallow correctly),

and time (it takes him

> forever to consume even a small portion). This is after YEARS of

therapy, including

> attendance at a 2-week feeding program 2.5 years ago. By the way,

guess what the main

> diet was at the feeding program - all carbs! The justification

was that cookies, crackers,

> and other snacks such as these are great for biting & chewing

practice as well as exposure

> to different textures (some melt in the mouth, others are more

work to get down, etc.

>

> I think I have come to accept what he is willing and able to do in

terms of eating even if

> that means he will never get rid of his g-tube. I have strong

feelings of guilt when it

> comes to all the years we spent basically torturing him with

food. He is 11 now, and I am

> hoping that at some point when he is older & when peer pressure

becomes an issue, this

> will be more motivating for him to get rid of his g-tube. He wore

the Zevex mini-

> backpack for the first time to school today. Prior to this, he

only used the g-tube at night.

> I don't know, nor do I fully understand, whether he has blood

sugar issues, but I have

> noticed that his behavior has been exceptional today. I don't

know if this is just a

> coincidence or if it is related to being fed continuously today,

but I'll take whatever I can

> get!

>

> Kim C.

>

>

> > Hi Beth,

> >

> > Thanks for responding. condition seems to be more

complicated than

> > your daughter. He is continually g-tube fed, and suffers from an

oral

> > aversion, and severe hypo-g. Depending on activity levels,

's BS can

> > drop 30-40 points within 30 minutes off feeds. His is an

asthmatic, with RAD

> > and severe scarring of the lungs from an RSV infection. He takes

Singulair

> > for the asthma, and does nebulizer treatments to help keep his

lungs open.

> > He is on Zantac and Prevacid for reflux. He's had several severe

ear

> > infections, and just had tubes placed yesterday.

> >

> > He recently started accepting enough Stage 2 baby foods to lower

his pump

> > feed rates for the first time, but most " other " foods or

textures aren't

> > acceptable to him. He's never felt " hunger " as far as we can

tell. He eats

> > because he's been conditioned to do so, but he only eats what he

wants.

> > There is no forcing " correct " foods for any oral feeding regimen

down him.

> > If he doesn't want it, it won't go in his mouth, no matter how

much you try.

> >

> > I am very interested in introducing to healthier, more

diabetic-type

> > foods because he's insulin resistant, and with the back up of

the g-tube, we

> > have time to work with him. Time to shape his tastes towards

foods that

> > would be healthier for him in the long run. But I don't

understand how this

> > food regimen would work for him. He eats NO meats whatsoever, NO

veggies

> > unless pureed, same for fruits. As far as table food, he'll only

do those

> > things that have certain textures, and those are mainly carbs,

French fries,

> > White bread (no whole grains)Cheerios, Fruit Loops, crackers,

chips. He has

> > SID so there are numerous textures that he won't touch (meaning

they won't

> > make it into his mouth either), or that make him gag.

> >

> > What would your suggestions be?

> >

> > Pat (g-ma to , RSS, 3 yrs old, 23.5# (10.7kg), 32.8 "

(83.3cm),

> > G-Tube)

[Guest guest]

Beth,

There are 2 different types of tubes you can attach to a button to bolus feed

through. One

is thicker than the other, but the problem occurs because of the diameter of the

hole on

the inside of the g-tube. You can use a syringe with a plunger to push the

contents in,

but if it clogs, this is sometimes hard to do. I never use th plunger with

, because

then I am unable to vent the air (gas) from his stomach & this really hurts him.

G-tube kids are primarily fed a balanced nutrition formula (though some are

higher in

sugars than others). Many g-tube kids, including mine, consume little or

nothing by

mouth for various reasons (lack of hunger, severe reflux, delayed gastric

emptying,

sensory disintegration disorders, oral aversion, etc.) is probably one

of the more

severe kids with respect to all of these problems. In addition, he was in the

NICU initially

for 7.5 months. He was on a ventilator for 2 months & had all sorts of other

tubes & wires

through his mouth & other parts of his body. He wasn't stable enough to be

given a bottle

or anything else by mouth until he was 4 months old, and then at that point he

not only

did not have the skills, but he couldn't handle it respiratory-wise. He had a

SEVERE oral

aversion due to all the tubes that were forced down his throat/nose all those

months

(ventilator, nasal cannula for oxygen, NG tube, pH probe - you name it - he had

it!).

Unfortunately for him, his problem persisted much longer than the norm.

Luckily, many

children who have oral aversions such as his, are able to overcome their issues

given time

and appropriate amounts of therapy.

Kim

> Hi Kim,

>

> I am not overly familiar with G-tubes since never needed

> one. Is it that the tube diameter is too small for the texture of

> protein? Do all G-tube kids only eat carbohydrates because of this

> problem? I assume they must eat some protein via the mouth.

>

> Interesting comments about the 2 week therapy program being all

> simple carbohydrates.

>

> Beth

>

>

>

> >

> > Pat & Beth,

> >

> > I have to admit I have only skimmed all the long articles Beth has

> been posting, because I

> > also thought it would be impossible to tackle this issue with a

> kid like mine. Then, I read

> > your post, Pat. is a younger version of in many

> ways. The good news is

> > that has come a long way in terms of his respiratory

> issues. I think time is an

> > important factor. wore oxygen for 2.5 years and did all

> the nebulizer treatments,

> > meds, etc. Now, we only use the nebulizer when he gets sick. He,

> too, has sensory

> > integration issues, which have improved somewhat over the years.

> He used to retch,

> > throw up, sweat, and need more oxygen at the sight of anything

> which appeared gross to

> > him (which was basically everything). When I started looking

> around for preschools, I'll

> > never forget his reaction to a little girl who came up to him

> covered in cookie dough from

> > working on a classroom project. He freaked out & threw up - good

> first impression, huh?

> >

> > Getting back to the diet issues - I wondered how you could control

> carbohydrate

> > consumption with a kid who gets essentially 95-100% of his

> calories via g-tube. We have

> > only tried feeding him pureed foods through his tube once, and it

> was a disaster. The

> > food wouldn't go down, and then when it finally did, the tube got

> clogged. now

> > has the ability to eat some foods, but even when he is willing to

> eat, it is not the norm in

> > terms of quantity (he is FAR from being able to consume the

> calories he would need to

> > sustain himself), quality (he does not chew or swallow correctly),

> and time (it takes him

> > forever to consume even a small portion). This is after YEARS of

> therapy, including

> > attendance at a 2-week feeding program 2.5 years ago. By the way,

> guess what the main

> > diet was at the feeding program - all carbs! The justification

> was that cookies, crackers,

> > and other snacks such as these are great for biting & chewing

> practice as well as exposure

> > to different textures (some melt in the mouth, others are more

> work to get down, etc.

> >

> > I think I have come to accept what he is willing and able to do in

> terms of eating even if

> > that means he will never get rid of his g-tube. I have strong

> feelings of guilt when it

> > comes to all the years we spent basically torturing him with

> food. He is 11 now, and I am

> > hoping that at some point when he is older & when peer pressure

> becomes an issue, this

> > will be more motivating for him to get rid of his g-tube. He wore

> the Zevex mini-

> > backpack for the first time to school today. Prior to this, he

> only used the g-tube at night.

> > I don't know, nor do I fully understand, whether he has blood

> sugar issues, but I have

> > noticed that his behavior has been exceptional today. I don't

> know if this is just a

> > coincidence or if it is related to being fed continuously today,

> but I'll take whatever I can

> > get!

> >

> > Kim C.

> >

> >

> > > Hi Beth,

> > >

> > > Thanks for responding. condition seems to be more

> complicated than

> > > your daughter. He is continually g-tube fed, and suffers from an

> oral

> > > aversion, and severe hypo-g. Depending on activity levels,

> 's BS can

> > > drop 30-40 points within 30 minutes off feeds. His is an

> asthmatic, with RAD

> > > and severe scarring of the lungs from an RSV infection. He takes

> Singulair

> > > for the asthma, and does nebulizer treatments to help keep his

> lungs open.

> > > He is on Zantac and Prevacid for reflux. He's had several severe

> ear

> > > infections, and just had tubes placed yesterday.

> > >

> > > He recently started accepting enough Stage 2 baby foods to lower

> his pump

> > > feed rates for the first time, but most " other " foods or

> textures aren't

> > > acceptable to him. He's never felt " hunger " as far as we can

> tell. He eats

> > > because he's been conditioned to do so, but he only eats what he

> wants.

> > > There is no forcing " correct " foods for any oral feeding regimen

> down him.

> > > If he doesn't want it, it won't go in his mouth, no matter how

> much you try.

> > >

> > > I am very interested in introducing to healthier, more

> diabetic-type

> > > foods because he's insulin resistant, and with the back up of

> the g-tube, we

> > > have time to work with him. Time to shape his tastes towards

> foods that

> > > would be healthier for him in the long run. But I don't

> understand how this

> > > food regimen would work for him. He eats NO meats whatsoever, NO

> veggies

> > > unless pureed, same for fruits. As far as table food, he'll only

> do those

> > > things that have certain textures, and those are mainly carbs,

> French fries,

> > > White bread (no whole grains)Cheerios, Fruit Loops, crackers,

> chips. He has

> > > SID so there are numerous textures that he won't touch (meaning

> they won't

> > > make it into his mouth either), or that make him gag.

> > >

> > > What would your suggestions be?

> > >

> > > Pat (g-ma to , RSS, 3 yrs old, 23.5# (10.7kg), 32.8 "

> (83.3cm),

> > > G-Tube)

[Guest guest]

Before someone starts to think that cleft palate is an RSS thing....I DIDN'T

have one

<wink>.

-Sharon-

Just an RSS kid who grew up

Pat,

> 's eating habits sound exactly like mine!! I was only tube fed (for

non

> RSS reasons) for a few months after birth until they could repair my cleft

> palate and make sure the food going in my mouth was not coming out my nose,

but

> I had (and in some cases, still have) many of the oral aversions that

> has. I wouldn't even *touch* a piece of meat until I was almost eight, and

> even today, I refuse to eat any meat that's been ground, anything that is or

> even remotely resembles a pork product, and beef. I also don't like anything

> slimy, pasty or overly mushy. I spent *years* working on these issues, but

> still have them. Even so, I managed to eat a fairly well balanced diet,

> although I tend to eat the same things over and over again. That's fine with

> me, though, I would rather eat the same thing than eat things I don't like.

>

> ~Hillary

> 22, RSS

>

>

> ---------------------------------

>