Feeding Issues - Long!

[Guest guest]

I took Matt to see a pediatric gastroenterologist last night. I had

a bunch of information copied about RSS and Matt's whole history,

and I left it at home. He has heard of RSS, but not familiar with

it. After listening to me ramble on and on about our feeding

problems and Matt's probable reflux he wants to try several things.

I am wondering if any of you have experience with these...

1. He wants to test him for parasites, a stool sample, no big deal

2. He wants to test Matt for H.Pylori, which is the bacteria that

causes ulcers, and can cause reflux. Not a huge deal, but it is a

low acid diet and a breathe test in two weeks. I am ok with that.

3. Then he started to explain to me that I had to stop forcing Matt

to eat. I should just put the food in front of him, give him 30

minutes and walk away. If he doesn't eat everything, he gets

nothing until the next meal. I tried to explain to him that Matt

won't care, he won't eat and he will be thrilled with this

arrangement. I have had many people over the years tell me " kids

will eat when they are hungry " , but I am telling you, Mine won't.

Plus, his behavior suffers since his blood sugar is low and then

he'll be at school where all heck will break lose. I told him last

night I wouldn't do that until we got these other tests back. My

plan is to take all this information to his office. I am NOT going

to do the " 30 minutes to eat or else " until we know for sure if Matt

is RSS Or not.

I guess my question for those of you with older, diagnosed RSS

children, do you give them time limits? I literally tell

Matt, " Take a bite " , " chew " , " swallow " ...he would (and has) sit

there for hours with one bite in his mouth!

AAAAAAAAAAAAgghgh.. I am so frustrated. I used to think this whole

eating thing was a behavior problem that needed to be " kept on top

of " , now I am convinced he has no hunger, no oral needs (bottle

broke himself at 8 months - refused it, no pacifier, no thumb). But

I still need him to eat!

Ok, sorry to vent. You are all more experienced at this than me, so

I guess I am looking for advice to keep myself from crying my eyes

out! Seems like all I do is force him to eat, clean up, give him a

snack and then it is time for another meal....

Beth

[Guest guest]

Hi,

I'm not sure how old Matt is, but with age 3 that would never

work. What we do with is:

1. turn on a video - when distracted, he doesn't notice that he is

eating.

2. start with " real food " (something he has to chew)

3. when he stops eating and won't start again, I move to spoon food -

ie yogurt, pudding, applesauce, jello

I will keep in his hight chair until I am sure that he will not

eat another bite. I try to put on a dinner video that lasts at least

45 minutes (if the video ends sooner, he will just insist on getting

up sooner).

If that was me, I would look for another ped GI. It is obvious that

he doesn't understand that (some) RSS children just do not experience

hunger. What is worse, skipping a meal is dangerous for RSS children

who can go hypo-g.

Good luck,

Judith, Steve, (RSS) and (non RSS) 3 year old twins

[Guest guest]

Beth,

I agree with the other suggestions people already made. I have one

of those 'older' RSS children. She also happens to have a g-tube and

take periactin. We tried a 5 day experiment this summer doing what

your doctor suggested. It had to be stopped on day 3 because she

consumed so little ....roughly 350 calories a day. The most

revealing thing of all was the second dinner. I got a phone call

right at the start of dinner and I walked away. When I returned, I

told her dinner was over. She said " Mommy, I forgot to eat " After

two days of barely eating, she still wasn't getting normal hunger

signals. For her, she eats because of my expectation and her desire

to please me. She is definitely not eating because her body

requests it. I know it is hard for others to get this. I still

have a hard time believing it myself!

I would trust your instincts with that one.

And, you are not alone on the 'chew', 'swallow', 'take another bite'

thing. Isn't it tedious? I do think that has improved in the past

year for us. But, I still have to cue her on 'take another bite'.

Hang in there,

Irene

Mom to 6 year old

> I took Matt to see a pediatric gastroenterologist last night. I

had

> a bunch of information copied about RSS and Matt's whole history,

> and I left it at home. He has heard of RSS, but not familiar with

> it. After listening to me ramble on and on about our feeding

> problems and Matt's probable reflux he wants to try several

things.

> I am wondering if any of you have experience with these...

>

> 1. He wants to test him for parasites, a stool sample, no big deal

>

> 2. He wants to test Matt for H.Pylori, which is the bacteria that

> causes ulcers, and can cause reflux. Not a huge deal, but it is a

> low acid diet and a breathe test in two weeks. I am ok with that.

>

> 3. Then he started to explain to me that I had to stop forcing

Matt

> to eat. I should just put the food in front of him, give him 30

> minutes and walk away. If he doesn't eat everything, he gets

> nothing until the next meal. I tried to explain to him that Matt

> won't care, he won't eat and he will be thrilled with this

> arrangement. I have had many people over the years tell me " kids

> will eat when they are hungry " , but I am telling you, Mine won't.

> Plus, his behavior suffers since his blood sugar is low and then

> he'll be at school where all heck will break lose. I told him last

> night I wouldn't do that until we got these other tests back. My

> plan is to take all this information to his office. I am NOT going

> to do the " 30 minutes to eat or else " until we know for sure if

Matt

> is RSS Or not.

>

> I guess my question for those of you with older, diagnosed RSS

> children, do you give them time limits? I literally tell

> Matt, " Take a bite " , " chew " , " swallow " ...he would (and has) sit

> there for hours with one bite in his mouth!

>

> AAAAAAAAAAAAgghgh.. I am so frustrated. I used to think this

whole

> eating thing was a behavior problem that needed to be " kept on top

> of " , now I am convinced he has no hunger, no oral needs (bottle

> broke himself at 8 months - refused it, no pacifier, no thumb).

But

> I still need him to eat!

>

> Ok, sorry to vent. You are all more experienced at this than me,

so

> I guess I am looking for advice to keep myself from crying my eyes

> out! Seems like all I do is force him to eat, clean up, give him a

> snack and then it is time for another meal....

>

> Beth

[Guest guest]

Hi Beth,

Just to add a little bit to the replies you've already gotten -

yes, " chew, swallow, take another bite " happens at nearly every

mealtime and is very tedious and frustrating!

Most of the time, I just deal with it and get on with things, though

some days I want to scream and/or cry - and sometimes do. Another

bad effect is that eating has become a hot button with my other two

children who are perfectly healthy weight-wise - if they start

getting picky or won't eat something I serve, I can feel the knots in

my stomach tightening and have to remind myself that all kids are

like this and not to worry. But I know it'll get better. I hope

Tyler responds to GHT like - I can't wait for Tyler to

develop a natural hunger!

Two things to add to the list of ways to make it easier:

(1) Every 2nd or 3rd bite is a food that he loves - usually fruit or

vegetables. If he knows he's getting a piece of orange or grape or

mushroom next, it really speeds up the time it takes him to chew and

swallow the higher-calorie foods.

(2) When he was younger, we used the video distraction method.

However, around age 3 1/2 this stopped working so well b/c he'd zone

in on the TV and stop chewing. So we play music and try to have fun

and talk during meals.

- Tyler's mom

[Guest guest]

,

Thanks! I am thankful to everyone on this board for my sanity.

Matt has started to do " homework " , dot to dots, word finds, etc

while eating his breakfast. It keeps him distracted and kind

of " preps " him for working at school. If I can get him distracted

he will just eat and swallow as I prompt him, if not he gets angry

and starts resisting!

Beth

> Hi Beth,

>

> Just to add a little bit to the replies you've already gotten -

> yes, " chew, swallow, take another bite " happens at nearly every

> mealtime and is very tedious and frustrating!

>

> Most of the time, I just deal with it and get on with things,

though

> some days I want to scream and/or cry - and sometimes do. Another

> bad effect is that eating has become a hot button with my other

two

> children who are perfectly healthy weight-wise - if they start

> getting picky or won't eat something I serve, I can feel the knots

in

> my stomach tightening and have to remind myself that all kids are

> like this and not to worry. But I know it'll get better. I hope

> Tyler responds to GHT like - I can't wait for Tyler to

> develop a natural hunger!

>

> Two things to add to the list of ways to make it easier:

>

> (1) Every 2nd or 3rd bite is a food that he loves - usually fruit

or

> vegetables. If he knows he's getting a piece of orange or grape

or

> mushroom next, it really speeds up the time it takes him to chew

and

> swallow the higher-calorie foods.

>

> (2) When he was younger, we used the video distraction method.

> However, around age 3 1/2 this stopped working so well b/c he'd

zone

> in on the TV and stop chewing. So we play music and try to have

fun

> and talk during meals.

>

> - Tyler's mom