eating during the day questions

[Guest guest]

Hi All, it's been a while since I posted. Staying at home with the

kids is quite the job. I have a lot less computer time at home than

when I used to work during the day!

Here's the good news and the bad news (my question).

Good News, since September Adam has gained almost 4 pounds. That's

when we started the peptamin Jr (3 cans over 10 hours) at night. It's

great and he's cruising now, not far from walking on his own...

Bad news, during the day he eats " normal " , meaning about 4 to 5 times

a day I put him in the high chair and offer him a cup of supermilk

(1/4 cup dry to 1 cup wet milk) or carnation instant breakfast and

toddler (gerber) crackers or graham crackers. He really prefers to

feed himself but can't handle the spoon yet. So I fight with him to

get the fruit sauce and enzymes down him (he just went to one Ultrase

MT 18 with a meal). Then I let him eat finger foods. He especially

like apples right now. The problem is he's developed this bad habit of

letting the milk run right out of his mouth or chewing up his finger

food and then pushing it back out of his mouth. Then he wants more

food or more to drink after NOT swallowing what he just chewed up!

It's agravating to watch him go to all the work of chewing up this

food and then NOT SWALLOWING! ARGH!!!

Any suggestions? Anyone else watched their darling do this and feel

the frustration? How did you handle it? How do I teach him to swallow

what he worked so hard to chew up. (And it's a real mess to clean up

too.... ick)

Thanks for listening and any ideas you might have,

Crystal

mom to Adam 20mo wcf and le 4yr nocf.

[Guest guest]

Zach will do that and it is so frustrating. Zach has gained only

one pound since May. I think it has more to do with teething. Zach

was cutting his eye teeth about that time. He might eat ice cream.

Ice cream is always a winner with Zach, but I must give Zach a spoon

too so he can help me feed him. It is such a mess, but Zach likes

it.

Sara

> Hi All, it's been a while since I posted. Staying at home with the

> kids is quite the job. I have a lot less computer time at home than

> when I used to work during the day!

>

> Here's the good news and the bad news (my question).

> Good News, since September Adam has gained almost 4 pounds. That's

> when we started the peptamin Jr (3 cans over 10 hours) at night.

It's

> great and he's cruising now, not far from walking on his own...

>

> Bad news, during the day he eats " normal " , meaning about 4 to 5

times

> a day I put him in the high chair and offer him a cup of supermilk

> (1/4 cup dry to 1 cup wet milk) or carnation instant breakfast and

> toddler (gerber) crackers or graham crackers. He really prefers to

> feed himself but can't handle the spoon yet. So I fight with him to

> get the fruit sauce and enzymes down him (he just went to one

Ultrase

> MT 18 with a meal). Then I let him eat finger foods. He especially

> like apples right now. The problem is he's developed this bad

habit of

> letting the milk run right out of his mouth or chewing up his

finger

> food and then pushing it back out of his mouth. Then he wants more

> food or more to drink after NOT swallowing what he just chewed up!

> It's agravating to watch him go to all the work of chewing up this

> food and then NOT SWALLOWING! ARGH!!!

>

> Any suggestions? Anyone else watched their darling do this and feel

> the frustration? How did you handle it? How do I teach him to

swallow

> what he worked so hard to chew up. (And it's a real mess to clean

up

> too.... ick)

>

> Thanks for listening and any ideas you might have,

> Crystal

> mom to Adam 20mo wcf and le 4yr nocf.

[Guest guest]

Our 1 year old Mikayla does sort of the same thing. She has a

swallow aversion and hyperactive gag. She's having a video swallow

study next Tuesday. It that's negative, we begin behavior mod

therapy with speech. We think this all stems from her bouts of

reflux as an infant. Hard things in the back of the throat always

ment something bad, so she's been conditined to gag. Have you

talked to your physician about your concerns?

Donna

[Guest guest]

used to do this. It was awful and messy and FRUSTRATING!!!!! This was a

behavior she learned because of the reflux problems she had as an infant. I

eventually decided to get strict about the spitting. (we had tried the " please

no spitting darling baby " method and it hadn't worked) If she chewed it up and

spit it out, she came out of the high chair and the meal was done. A few

minutes later we would try it again. (yes it was very time consuming and she

would get VERY loud!) Eventually she did start swallowing better.

One thing that worked to get the enzymes into her was to let her have a spoon,

too. We use baby food peaches instead of applesauce for her enzymes.

would dip her spoon into the peaches and have a taste and then I would have a

turn feeding her the peaches and baby food combo. then she would have another

turn.........

I hope this helps

eating during the day questions

Hi All, it's been a while since I posted. Staying at home with the

kids is quite the job. I have a lot less computer time at home than

when I used to work during the day!

Here's the good news and the bad news (my question).

Good News, since September Adam has gained almost 4 pounds. That's

when we started the peptamin Jr (3 cans over 10 hours) at night. It's

great and he's cruising now, not far from walking on his own...

Bad news, during the day he eats " normal " , meaning about 4 to 5 times

a day I put him in the high chair and offer him a cup of supermilk

(1/4 cup dry to 1 cup wet milk) or carnation instant breakfast and

toddler (gerber) crackers or graham crackers. He really prefers to

feed himself but can't handle the spoon yet. So I fight with him to

get the fruit sauce and enzymes down him (he just went to one Ultrase

MT 18 with a meal). Then I let him eat finger foods. He especially

like apples right now. The problem is he's developed this bad habit of

letting the milk run right out of his mouth or chewing up his finger

food and then pushing it back out of his mouth. Then he wants more

food or more to drink after NOT swallowing what he just chewed up!

It's agravating to watch him go to all the work of chewing up this

food and then NOT SWALLOWING! ARGH!!!

Any suggestions? Anyone else watched their darling do this and feel

the frustration? How did you handle it? How do I teach him to swallow

what he worked so hard to chew up. (And it's a real mess to clean up

too.... ick)

Thanks for listening and any ideas you might have,

Crystal

mom to Adam 20mo wcf and le 4yr nocf.

[Guest guest]

Chrystal,

Maybe he has his mouth too full to swallow? Kids are so funny.

Gale

> Hi All, it's been a while since I posted. Staying at home with the

> kids is quite the job. I have a lot less computer time at home than

> when I used to work during the day!

>

> Here's the good news and the bad news (my question).

> Good News, since September Adam has gained almost 4 pounds. That's

> when we started the peptamin Jr (3 cans over 10 hours) at night.

It's

> great and he's cruising now, not far from walking on his own...

>

> Bad news, during the day he eats " normal " , meaning about 4 to 5

times

> a day I put him in the high chair and offer him a cup of supermilk

> (1/4 cup dry to 1 cup wet milk) or carnation instant breakfast and

> toddler (gerber) crackers or graham crackers. He really prefers to

> feed himself but can't handle the spoon yet. So I fight with him to

> get the fruit sauce and enzymes down him (he just went to one

Ultrase

> MT 18 with a meal). Then I let him eat finger foods. He especially

> like apples right now. The problem is he's developed this bad habit

of

> letting the milk run right out of his mouth or chewing up his finger

> food and then pushing it back out of his mouth. Then he wants more

> food or more to drink after NOT swallowing what he just chewed up!

> It's agravating to watch him go to all the work of chewing up this

> food and then NOT SWALLOWING! ARGH!!!

>

> Any suggestions? Anyone else watched their darling do this and feel

> the frustration? How did you handle it? How do I teach him to

swallow

> what he worked so hard to chew up. (And it's a real mess to clean up

> too.... ick)

>

> Thanks for listening and any ideas you might have,

> Crystal

> mom to Adam 20mo wcf and le 4yr nocf.

[Guest guest]

Crystal,

It sounds like Adam has a feeding tube of some kind. Just a couple of

questions.

1. Has he gotten most of his nutrition via feeding tube? Sometimes children

who have been fed with feeding tube when they were infants have not had a

chance to learn how to manage food in mouth and swallow. I know most people

think swallowing food is automatic but it is not.

2. Did he ever drink from bottle or did he go straight to cup? This may

sound dumb, but many children on feeding tubes at young age never drink from

bottle. If milk is coming back out of mouth, he may not know how to handle

liquids in mouth. Liquids (especially thin liquids) are harder to handle in the

mouth since they don't stick together and flow all over in the mouth. Children

who haven't had practice eating by mouth have a harder time handling food

especially liquids. Have you tried putting milk in sports bottle (I have found

rubbermaid juicy bottles to be very effective)? With a spout/straw that directs

the flow of liquid into back of mouth there is more control and swallow is

more controlled.

3. Is it just foods with texture that are spit back out? Does he eat pureed

type food without spitting it out? Or does he spit most of his food by mouth

out? If all types of food are being spit out, he may have swallow disorder or

over sensitivity to textures in his mouth or back of throat. This is

especially true of children who have reflux or who have had history of reflux.

Makes

sense to me. If everything I swallowed came back up burning, I wouldn't want

to swallow anything either.

4. Do you have Early Intervention in your state? If so, you might ask about

speech or occupational therapy (whoever deals with feeding in your

state/country) evaluation.

I work with many children who have eating issues. One of the things that I

tell parents is that with everything children deal with, the only things they

have complete control over is what they do with what goes into their mouths and

how they deal with what comes out the other end (in other words " potty

training " ). It sounds like Adam is getting enough nutrition to gain weight so

that

eating by mouth can be " fun " and not a battle. In my experience when eating

becomes a big issue, kids have a way of digging in their heals and guess who

wins the war. I understand that it is soooo frustrating, but try not to let

darling Adam know how it bothers you. Try to make it fun, but set limits and be

matter of fact about clean up and when its time to be finished. (And check to

make sure the no swallowing is a habit and not a safety concern. Many times

children know themselves that they are at risk if they swallow. Those of us

with children with CF already worry about lung damage. Aspiration (food going

into lungs due to poor swallow) can cause pneumonia and we don't want that.)

Sorry such a lengthy messege but I hope it might help. Give you darling

lots of hugs and kisses.

Edi, mom to Cory 16 w/cf and 15 w/cf

[Guest guest]

Adam had severe reflux for the first year of his life. When he'd

reflux we'd make a new bottle and give it to him immediately and he's

chug it down with gusto! We tried hard to make sure eating didn't

become negative. Still, He was only 14 pounds at age 1. That's when

they did the nissen fundoplication and placed a mic-key button. For

about 4 months following we did nighttime feeds of pediasure with

" normal " bottle and baby-food feedings during the day. (I kept him on

the bottle until HE gave it up at 18 months. I think he gave it up

because we dumped the enzymes directly in his mouth after about 4

sucks of liquid and then let him drink the rest of the bottle. Who

would want that gravel in their milk?)

He developed a hiatal hernia (at 15 months) and didn't tolerate the

pediasure night feeds. At the end of the summer we moved and got a new

GI doc with it and he put Adam on the peptamin Jr. So from May to

August the only nutrition Adam received was via mouth feedings. (From

May to August he only weighed 16 pounds.)

I guess the answer is yes, he gets most of his nutrition from the

night feeds. He does get excited about seeing his sippy cup. In the

last few days I've gone to telling him it's time to eat and he will

crawl over to his highchair. All positive stuff.

He fights pureed food because he knows the enzymes are on it. But once

the enzymes are down and he realizes it's just the food he eats it

fairly well for a while (no more than half a jar unless he's really

hungry). It's mostly the chewed food that comes back out and the milk

after about half a dozen drinks. I have gotten to the point where I

simply clean him up and taking him out of the highchair. I just worry

that if he keeps this up the weightgain will stall.

We do have Early Intervention and the Speech Therapist comes

everyother week. I will discuss this with her when she comes next.

Thanks for the suggestion. I forget that they are specialized in that

AREA of the body, not just the speech issue.

As for the aspiriation issue it's never been a real issue. Even when

Adam had his severe reflux and they were doing repeated upper GIs on

him he only aspirated once. His first month he was in the NICU and the

doc watched him carefully for silent aspiration and didn't find

evidence of it.

Thanks for all the responses!

> Crystal,

> It sounds like Adam has a feeding tube of some kind. Just a

couple of

> questions.

> 1. Has he gotten most of his nutrition via feeding tube? Sometimes

children

> who have been fed with feeding tube when they were infants have not

had a

> chance to learn how to manage food in mouth and swallow. I know

most people

> think swallowing food is automatic but it is not.

> 2. Did he ever drink from bottle or did he go straight to cup?

This may

> sound dumb, but many children on feeding tubes at young age never

drink from

> bottle. If milk is coming back out of mouth, he may not know how to

handle

> liquids in mouth. Liquids (especially thin liquids) are harder to

handle in the

> mouth since they don't stick together and flow all over in the

mouth. Children

> who haven't had practice eating by mouth have a harder time handling

food

> especially liquids. Have you tried putting milk in sports bottle (I

have found

> rubbermaid juicy bottles to be very effective)? With a spout/straw

that directs

> the flow of liquid into back of mouth there is more control and

swallow is

> more controlled.

> 3. Is it just foods with texture that are spit back out? Does he

eat pureed

> type food without spitting it out? Or does he spit most of his food

by mouth

> out? If all types of food are being spit out, he may have swallow

disorder or

> over sensitivity to textures in his mouth or back of throat. This

is

> especially true of children who have reflux or who have had history

of reflux. Makes

> sense to me. If everything I swallowed came back up burning, I

wouldn't want

> to swallow anything either.

> 4. Do you have Early Intervention in your state? If so, you might

ask about

> speech or occupational therapy (whoever deals with feeding in your

> state/country) evaluation.

>

> I work with many children who have eating issues. One of the things

that I

> tell parents is that with everything children deal with, the only

things they

> have complete control over is what they do with what goes into their

mouths and

> how they deal with what comes out the other end (in other words

" potty

> training " ). It sounds like Adam is getting enough nutrition to gain

weight so that

> eating by mouth can be " fun " and not a battle. In my experience

when eating

> becomes a big issue, kids have a way of digging in their heals and

guess who

> wins the war. I understand that it is soooo frustrating, but try

not to let

> darling Adam know how it bothers you. Try to make it fun, but set

limits and be

> matter of fact about clean up and when its time to be finished.

(And check to

> make sure the no swallowing is a habit and not a safety concern.

Many times

> children know themselves that they are at risk if they swallow.

Those of us

> with children with CF already worry about lung damage. Aspiration

(food going

> into lungs due to poor swallow) can cause pneumonia and we don't

want that.)

> Sorry such a lengthy messege but I hope it might help. Give you

darling

> lots of hugs and kisses.

>

> Edi, mom to Cory 16 w/cf and 15 w/cf