Irene/Jodi Z. and others with kids transitioned off g-tube feeds

[Guest guest]

Hi-

Our insurance changed and we've had to change all of Colin's

therapists and doctors to another hospital after working with the

same people for nearly 3 years. Anyway, we met with the new feeding

therapist this week who comes highly recommended from a variety of

sources. She has a plan for transitioning Colin to oral feeding that

is very different than everything I've heard (both on this listserve

and from other specialists) so I was hoping for some feedback.

Rather than continuing with the night time pump feedings and

gradually cutting back all daytime bolus feeds, she wants to do the

opposite. She would like us to work towards eliminating the night

time feeds and giving longer gravity feeds during the day while a

meal is going on. She said that in order to develop hunger/satiety

patterns he must not be fed at night. Right now he is getting 75% of

his calories at night so his body will never be able to tolerate

more volume during the day which makes sense to me.

She wants to break down the necessary calories into 4 or 5 mini

meals and offer the food. While he eats the gravity bag? feeds him

over a period of 20 minutes so his body becomes accustomed to a

larger volume of food over a standard meal time.

What she was saying does make sense. But my concerns are if he is

getting larger boluses during the day (say 8 oz. vs. 4 now) plus the

food he eats, how will he ever be hungry enough for the next meal

since his emptying time is a bit delayed? And is hypo-g still an

issue at age 3?

I'm very confused! At the convention, Dr. H wanted Colin to continue

his night time feeds and totally eliminate all bolus feeds to

develop hunger. At the time this was too drastic for Colin because

he wasn't eating enough variety of foods to provide adequate

nutrition.

I would appreciate any thoughts you may have.

Thanks!

Colin (RSS) & Hayden - 12/6/00

[Guest guest]

,

Does this therapist know the risks of discontinuing feeds

overnight? I would worry that Colin could develop hypoglycemia and

spill ketones in the morning. I don't think I agree with the idea

right now.

What I would recommend, and what we have done with Max, is to

decrease the nighttime feeds. Gradually. You don't want his system

to go into a frenzy because it is used to a certain amount

overnight. If you gradually decrease the feeds, you will see that

he gets hungrier during the day. But basically, breakfast is out of

the picture for awhile. Colin will still feel somewhat full from

the overnight.

As for the rest of the day, it is good for Colin to eat and get the

statisfaction of oral eating, but I am leery of the bolus feeds

during meals. As you said, you already know that he has a bit of a

delayed gastric emptying, so if you bolus too much, you are

defeating the purpose and possibly causing him to do what Max does

every night - throw up. It's like Max eats all day long, but it

does not digest properly or fast enough, so he has to purge in order

to eat dinner. Granted, Max's emptying study was much longer than

Colin's, but you still need to be careful.

So, I guess what I am saying is that the therapist has some good

ideas, but I don't agree with her method totally. Colin is still

going to need the nighttime feeds for a couple of more years, or

until he is eating enough during the day that you can get him to

drink milk with cornstarch before bed. And don't bolus feed too

much.

Have I helped here? I hope so.

Jodi Z.

[Guest guest]

Hi ,

I read your post & thought I'd add my two cents. My son is 10 and has had a

g-tube

his whole life with TONS of feeding therapy over the years. Up until he was 5

years

old, I had therapists coming to the house anywhere between 3-6 times per week.

In

the summer of 2002, I took him to a hospital in Virginia for a 2 week feeding

program. Needless to say, this kid has had all sorts of intense therapy.

I can't speak to the effects of hypoglycemia, because although I suspect my son

had

this when he was little, we did not know he had RSS until recently (believe it

or not) &

the rest of his health problems took precedence over any concerns that may have

been related to possible hypoglycemia. As far as the meals during the day go,

it

seems like an innovative approach, but I would have some concerns with the

delayed

gastric emptying. I think it would be hard for Colin to tolerate any sort of

oral meal

while he was being fed through the g-tube. My son could never tolerate large

boluses when he was younger without throwing up or having severe gagging

episodes, which led to an even greater aversion to oral eating. What we used to

do

was feed bolus feeds through the g-tube at predetermined intervals throughout

the

day, taking into account his caloric needs & the amount he could physically

tolerate at

one time. If I remember correctly, we may have been feeding him every 3-4 hours

when he was Colin's age. So, a half an hour before his next bolus feed was due

waas

the time we would attempt to oral feed for 2 reasons - to wait until he was

hungry

(although I sam still not sure if he truly knows what hunger is) & also so that

he could

have most of his prior meal digested without getting sick. If he was successful

at

eating his oral meal, we would determine the amount of calories consumed &

deduct

this from his next bolus feeding. Otherwise, he would get his normal bolus feed

through the g-tube after his therapy.

My son still gets the majority of his calories via g-tube through 2 bolus

feedings (one

when he goes to bed & one in the morning before he wakes). He consumes 2 - 3

small meals during the day orally. We switched him to a higher calorie formula

when

he was Colin's age in order to be able to give him the same amount of calories

with

less volume. He is on Nutren 1.5, and has been since he was 3 years old. This

has

45 calories per oz. instead of the typical 30 calories per oz. One thing to

consider

with a higher calorie formula is the density/osmalality of it. You would need

to talk

with Colin's doctor, as there could be some problems with the kidneys by

switching to

a higher calorie formula. Luckily, my son tolerated it just fine & has had no

problems.

I hope this was somewhat helpful. Feel free to e-mail me privately if you'd

like.

Kim C. (mom to , RSS, age 10)

> Hi-

> Our insurance changed and we've had to change all of Colin's

> therapists and doctors to another hospital after working with the

> same people for nearly 3 years. Anyway, we met with the new feeding

> therapist this week who comes highly recommended from a variety of

> sources. She has a plan for transitioning Colin to oral feeding that

> is very different than everything I've heard (both on this listserve

> and from other specialists) so I was hoping for some feedback.

>

> Rather than continuing with the night time pump feedings and

> gradually cutting back all daytime bolus feeds, she wants to do the

> opposite. She would like us to work towards eliminating the night

> time feeds and giving longer gravity feeds during the day while a

> meal is going on. She said that in order to develop hunger/satiety

> patterns he must not be fed at night. Right now he is getting 75% of

> his calories at night so his body will never be able to tolerate

> more volume during the day which makes sense to me.

>

> She wants to break down the necessary calories into 4 or 5 mini

> meals and offer the food. While he eats the gravity bag? feeds him

> over a period of 20 minutes so his body becomes accustomed to a

> larger volume of food over a standard meal time.

>

> What she was saying does make sense. But my concerns are if he is

> getting larger boluses during the day (say 8 oz. vs. 4 now) plus the

> food he eats, how will he ever be hungry enough for the next meal

> since his emptying time is a bit delayed? And is hypo-g still an

> issue at age 3?

>

> I'm very confused! At the convention, Dr. H wanted Colin to continue

> his night time feeds and totally eliminate all bolus feeds to

> develop hunger. At the time this was too drastic for Colin because

> he wasn't eating enough variety of foods to provide adequate

> nutrition.

>

> I would appreciate any thoughts you may have.

>

> Thanks!

>

> Colin (RSS) & Hayden - 12/6/00