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Re: 23 hr feedings

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As has never been on 23 hour feedings, I can only give you my

opinion. was capable of eating when he went on the pump (but

not enough to grow) so he went on for 17 hours at first and the

balance of the time he was off the pump to eat.

First, it is definitely possible to get aspiration pneumonia even

though he is not eating orally. My father is on a pump and has had

this happen numerous times. That would be due to the reflux. That

is one reason why Dr H now prefers to do a nissan fundoplication at

the same time the gtube is placed.

Second, we found that could not handle as high a pump dose at

night (when he is on continuously for 11 hours) as during the day.

We increased his daytime and decreased his nighttime dose. This is

still applicable to you (and Avery) as the body will normally digest

better during the day.

Third, per Dr H, the body digests slowest early in the morning (ie

around 7 am). That is why now comes off his pump at 6:30 am

(it is programable and turns itself off) instead of 8:30 am.

Fourth, is Avery on reflux medication? (and a lot of other

kids) is on prilosec in the morning and zantac at night.

Fifth, you are mom and you know best. If you feel that you need to

take him off the pump more, or vent more or change something, you

should. Certainly there is nothing wrong with trying to experiment

(within reason) with timing and dosage. Also, vent more often.

I know Pat's grandson is on 23 hour feeds. Hopefully she

will also respond as I know that they have had to adjust things as

well.

Good luck,

Judith, Steve, (RSS) and (non RSS) 3 1/2 year old twins

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Unfortunately, I can't answer the feeding questions. But yes,

absolutely a child can aspirate even if they aren't having reflux

come out the mouth. Dr. H showed me several children doing the

distinctive " mouth chew " at the convention, which she was explaining

is the reflux coming up (just not out...)

> hi everyone

> avery has been on 23 hour feeding for about 3 weeks now. we vent

him

> during every 15 min break that he get, which is only 4. and also

> before bed. but sometimes he has so much pressure that it actually

> pushes his button open while his is playing or whatever during his

> little break or while sleeping fuild leaks out from under his

button

> and just soaks the bed and him. what is causing this. he gets 44cc

an

> hour. and the wrenching is not getting any better. i wonder if i

> should slow his feeding down a little at night.

> any thoughts on this and is it normal? :)

> one more thing, is it possible to asperate while taking nothing by

> mouth? i am taking him to a pulmonary dr to have his lungs checked

> due to all the wrenching and reluxing. nothing comes out his

mouth,

> but we are not sure what is going on inside him.

> but i got him a little bob the builder suite case/backpack with

the

> handle and wheels. so i can put his feeding pump backpack in it so

he

> doesn't have to wear it all the time. he loves it and pulls it

around

> with him as he plays. can't beleive he realizes that he has to do

> that, so smart. :):)

> talk to ya all later

>

> amy syd 11 1/2 non rss, kaleb 14 non rss, avery 2 1/2 rss

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Hi Amy

My son Liam is 2yr 4mnths, Liam has a gtube and needs constant feeds

to maintain his weight, but instead of keeping him on the pump 23

hours we bolus feed him every hour during the day and he is on the

pump at night.

The pros for this are that slowly Liam is coping with bigger bolus

feeds up to 70mls, and so I feel his stomach is getting bigger( at

last) as this has happened his reflux is alot better, at night we run

him at 45- 50mls/hr, and we have made a dodgy Farrell valve(as they

arent available in Australia) which is keeping the reflux under

control at night. I also feel Liam has alot more freedom to run

around and play, because if he has his pump on he tends to sit down

and not play as much.

The cons are hourly feeds, keeping up, washing tubes, and I guess he

runs all his calories off.

Pat is the one to talk to about the continuous pump feeds, I just

thought Id mention the way we do it, maybe I should email Dr H and

ask her the difference between contiuous and bolus feeding, Im

probably doing it all wrong, let me know what you think, how big is

Avery? Does he have problems carrying his pump? I like the Bob the

builder bag idea.

Take care

Jody ( mum to Liam 2.4 18lb 29inches and Cameron 5 )

> hi everyone

> avery has been on 23 hour feeding for about 3 weeks now. we vent

him

> during every 15 min break that he get, which is only 4. and also

> before bed. but sometimes he has so much pressure that it actually

> pushes his button open while his is playing or whatever during his

> little break or while sleeping fuild leaks out from under his

button

> and just soaks the bed and him. what is causing this. he gets 44cc

an

> hour. and the wrenching is not getting any better. i wonder if i

> should slow his feeding down a little at night.

> any thoughts on this and is it normal? :)

> one more thing, is it possible to asperate while taking nothing by

> mouth? i am taking him to a pulmonary dr to have his lungs checked

> due to all the wrenching and reluxing. nothing comes out his mouth,

> but we are not sure what is going on inside him.

> but i got him a little bob the builder suite case/backpack with

the

> handle and wheels. so i can put his feeding pump backpack in it so

he

> doesn't have to wear it all the time. he loves it and pulls it

around

> with him as he plays. can't beleive he realizes that he has to do

> that, so smart. :):)

> talk to ya all later

>

> amy syd 11 1/2 non rss, kaleb 14 non rss, avery 2 1/2 rss

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Amy,

I think others have told you about the aspiration that comes from

reflux, so I will not go into that.

I will, however, go into the feeding and gas situation. First of

all, I would bet that Avery has delayed gastric emptying. You are

putting all of this formula into him and it is just building up and

not having a chance to empty out at any point in time.

One " solution " would be to give him a two hour break instead of 4

15 minute breaks. I know it is an extra hour off the pump, but he

stomach would get a much needed rest that way. Also, I would

consider slowing down the rate while he is sleeping. Digestion does

slow down and that would cause him discomfort if his stomach is not

emptying.

Now for the gas pressure... I once again speak highly of the

Farrell Valves. If you hook Avery up to one while he is being fed

at night, the gas will have a chance to escape while he is sleeping

and you will not have that pressure that makes the button pop open.

You can do a Google search to find the website and it will explain

all about them.

I don't know if Avery is old enough, but when Max had a lot of gas

in the hospital, in addition to venting we gave him simethicone. It

did relieve some of the gas pain and pressure, but venting worked

the best.

I hope this helps. I'm sure that if you took Avery to Dr H., she

would order a gastric emptying test and an upper GI. Then she would

put Avery on the schedule for a pyloraplasty and fundo. Maybe

trying some of these other things will help, though.

Jodi Z.

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thank you all for all the help.

avery has already had the fundo, and he is on prilosec and zantac.

he was having 4 hour feedings a day and a al night feeding. dr h

changed him to 23 hr feeding. he just doesn't seem to handle any

feedings well. his stomache does empty slowly.

his button has come out serveral times since he has had it. but i

sure didn't know about taking it out to clean it. i was just cleaning

it daily with a cotton swab.

i think i might have a venting bag i just didn't know what it was.

thanks again.

amy averys momma

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Yes, it is possible to aspirate even if you do not eat by mouth.

J

>

> Reply-To: RSS-Support

> Date: Thu, 09 Oct 2003 15:20:35 -0000

> To: RSS-Support

> Subject: 23 hr feedings

>

> hi everyone

> avery has been on 23 hour feeding for about 3 weeks now. we vent him

> during every 15 min break that he get, which is only 4. and also

> before bed. but sometimes he has so much pressure that it actually

> pushes his button open while his is playing or whatever during his

> little break or while sleeping fuild leaks out from under his button

> and just soaks the bed and him. what is causing this. he gets 44cc an

> hour. and the wrenching is not getting any better. i wonder if i

> should slow his feeding down a little at night.

> any thoughts on this and is it normal? :)

> one more thing, is it possible to asperate while taking nothing by

> mouth? i am taking him to a pulmonary dr to have his lungs checked

> due to all the wrenching and reluxing. nothing comes out his mouth,

> but we are not sure what is going on inside him.

> but i got him a little bob the builder suite case/backpack with the

> handle and wheels. so i can put his feeding pump backpack in it so he

> doesn't have to wear it all the time. he loves it and pulls it around

> with him as he plays. can't beleive he realizes that he has to do

> that, so smart. :):)

> talk to ya all later

>

> amy syd 11 1/2 non rss, kaleb 14 non rss, avery 2 1/2 rss

>

>

>

>

>

>

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Hi Amy,

It seems to me that Avery needs his feed rate lowered. I would talk to you

GI, and figure out how many calories are absolutely necessary for growth.

Dr H recommended that the majority of calories are given during the day when

the digestive tract moves more efficiently. And that feeds are lowered at

night when digestion slows. As I said, does 33cc/hr during the day,

but only 25cc/hr at night, but the hours are not divided up evenly. The day

rate runs for 14 hours and the night rate for only 10. I don't think that

could do over 40cc/hr even at 19#!

I, also, wouldn't worry about taking the button out. I really think the more

important part of button care is keeping it clean and dry. One thing I was

told was to never use straight hydrogen peroxide on the button site. This

can cause tissue damage, and ultimately might cause granulation. Always use

a 50/50 mix.

Hopefully, between lowering the cc/hr rate, and venting more often, you'll

be able to get the pressure under control.

Take Care

Pat (g-ma to , RSS, 21.5 months, 19# 5oz (8.76kg), 29.5 " (75cm),

Prevacid, Zantac, Singulair, GT)

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