Questions regarding tubes

[Guest guest]

Dawna,

I'm sorry i forget where your from? The P med is called periactin but you

need to watch because Dr. H told me that if a child has gastric emptying delay

and you start them on that before the delay is corrected it won't work.

Your pediatrican needs to do weekly weight checks untill you are sure that

your child gains regularly. Our daughter Madison has a feeding tube and has had

it since she was 6 months old. She does eat by mouth but very little.

Children usually need the feeding tubes when they don't eat enough calories to

gain

( thats y you need a weekly weight check ) Some kids like maddy only get

over night feedings for extra calories and to keep her blood sugar up while she

sleeps. But some kids ( I think pat's grandson is one of them ) need

tube feedings 24 -7. This is y I suggest you meet Dr. H thats who decided

Maddy needed a tube and it was the best think that ever happened to her.

If i were you i'd invest in an accu check and keep a log of your childs

daily sugars. This way you will know what a normal blood sugar for your child

is.

for example Madison's sugar is always between 120-150 so if it's lower or

higher than i know somethings off. Her vlood sugars altering is a first sign for

her that she's getting sick.

I hope all of this helps.

Chrissy

[Guest guest]

Hi all,

I have a few questions about feeding tubes. It seems that most of

the kids have them. Can you tell me at what point they seem to need

them? Our Ped wasn't following Noah that closely (will be now and

I'm considering changing ... took me 3 mos to get the chomosome 7

results that I'm sure were sitting there that long).

Noah has never been sick and in hospital, he seems to eat but it's

not much at a time, I'm getting really worried that we aren't doing

enough except at the same time I'm worried that he will need a tube.

Do you know what I mean? We were worried lately about hypoglycemia

he's always been a sweaty little guy (but then my others are too)and

lately he started waking in the night ... we've been giving him milk

not knowing if it was his sugars or if it was just behavoural. Also

since finding more info about RSS from here and Magic, I started

putting a little corn starch in his milk before bed.

I'm hoping the endocrinologist will shed some light next week when we

go cause we don't see the ped until november. I'm also going to ask

about that drug that starts with P for appetite. Sorry not up on all

the names yet. I'm going to see if he'll check Noah's sugar when he

does the other testing. We haven't been to the ped since the spring

so I don't even know if NOah has gained weight or not.

Do the kids eat too when they have tubes?

Dawna

[Guest guest]

HI!

My daughter Emerence is 31 months, 22 lb and 32 " and is SGA but with

a heck of a lot of RSS characteristics, just all mild. Either way,

treatment is the same. She does not have a feeding tube but eats.

However she has been " stuck " at her weight for a while so we think

caloric catchup is complete so are looking to start Gh in December.

Emerence ate every 2-3 hours for the first 8 months of life. I went

back to work after 3months so I was a walking zombie but now I'm so

glad I always got up to try and feed her. AND, she also did what

Noah does. For about a year after that she would wake up at 2 am – 3

amish and I would feed her a high calorie yogurt smoothie mixed with

cream. It was terrible, I was so so tired all the time but I think

it prevented hypoglycemia.

Emerence has had a bout lately with low blood sugars. We bought a

glucometer from the drugstore and test her when she is sick and not

eating. We also test ketones in her urine by using ketosticks bought

from the drugstore as well.

The " P " drug is " pericactin " . It is an antihistamine but also helps

some kids (not all) as an appetite enhancer.

Good luck with the endo next week!

, mom to 5 and Emerence

> Hi all,

> I have a few questions about feeding tubes. It seems that most of

> the kids have them. Can you tell me at what point they seem to

need

> them? Our Ped wasn't following Noah that closely (will be now and

> I'm considering changing ... took me 3 mos to get the chomosome 7

> results that I'm sure were sitting there that long).

>

> Noah has never been sick and in hospital, he seems to eat but it's

> not much at a time, I'm getting really worried that we aren't doing

> enough except at the same time I'm worried that he will need a

tube.

> Do you know what I mean? We were worried lately about hypoglycemia

> he's always been a sweaty little guy (but then my others are too)

and

> lately he started waking in the night ... we've been giving him

milk

> not knowing if it was his sugars or if it was just behavoural.

Also

> since finding more info about RSS from here and Magic, I started

> putting a little corn starch in his milk before bed.

>

> I'm hoping the endocrinologist will shed some light next week when

we

> go cause we don't see the ped until november. I'm also going to

ask

> about that drug that starts with P for appetite. Sorry not up on

all

> the names yet. I'm going to see if he'll check Noah's sugar when

he

> does the other testing. We haven't been to the ped since the

spring

> so I don't even know if NOah has gained weight or not.

>

> Do the kids eat too when they have tubes?

>

> Dawna

[Guest guest]

Dawna,

The decision to get a g-tube is based on several factors. One is

Noah's weight. Is he gaining weight? Is his weight for height

proportion in the " normal " range? Does he have hypoglycemia? Do

you struggle to get every single calorie into him? These are just a

few things to consider.

Most of us who have gone the g-tube route have fought it and denied

the need and just not wanted anything to do with it. But once it

was placed, every single one of us has been so very thankful. It's

not hard to deal with, although a bit daunting at first, and it

takes so much stress off of us! No more need to fight to get those

calories in!

Yes, kids with tubes DO eat. Most of them, anyway. Max was on 24

hour feedings for a few years, then we were able to switch to just

nighttime feeds. He was never able to tolerate bolus feeds, which

means that you put the formula into a large syringe and push it into

the tube, several ounces at a time. He ate fairly well during the

day, but if he had a bad one, we just had to add the extra calories

into his pump feedings at night. Unfortunately, he had nighttime

hypogylcemia, so we had to continue the feeds for longer than

planned. He just could not go all night without food.

As for the hypoglycemia part, you can ask your doctor to check

Noah's blood sugar levels, but you might not catch a drop in them at

that particular point in time. You really need to have a glucose

monitor and test his sugars at various times during the day over a

certain period of time - and whenever you think he is just not

acting right. For example, Jodie Cals emailed me on Saturday that

's behavior was off and his blood sugar level was 80.

(According to Dr. H., that is on the low end of " normal " for our

kids.) Sure enough, he started to run a fever a little later on.

You also should check for ketones. You would buy a bottle of

ketosticks at the pharmacy where the diabetic supplies are. Then

you collect just a few drops of urine and place them on the strip.

Compare the color of the strip, after a few seconds, to the color on

the bottle. If there are more than a trace, or even if there are a

trace, make him eat and/or drink. Drinking is especially important.

There is a whole protocol to follow if the ketones are moderate to

large, so let me know if you want me to go into this. I've made

this message long enough.

Jodi Z

> Hi all,

> I have a few questions about feeding tubes. It seems that most of

> the kids have them. Can you tell me at what point they seem to

need

> them? Our Ped wasn't following Noah that closely (will be now and

> I'm considering changing ... took me 3 mos to get the chomosome 7

> results that I'm sure were sitting there that long).

>

> Noah has never been sick and in hospital, he seems to eat but it's

> not much at a time, I'm getting really worried that we aren't

doing

> enough except at the same time I'm worried that he will need a

tube.

> Do you know what I mean? We were worried lately about

hypoglycemia

> he's always been a sweaty little guy (but then my others are too)

and

> lately he started waking in the night ... we've been giving him

milk

> not knowing if it was his sugars or if it was just behavoural.

Also

> since finding more info about RSS from here and Magic, I started

> putting a little corn starch in his milk before bed.

>

> I'm hoping the endocrinologist will shed some light next week when

we

> go cause we don't see the ped until november. I'm also going to

ask

> about that drug that starts with P for appetite. Sorry not up on

all

> the names yet. I'm going to see if he'll check Noah's sugar when

he

> does the other testing. We haven't been to the ped since the

spring

> so I don't even know if NOah has gained weight or not.

>

> Do the kids eat too when they have tubes?

>

> Dawna

[Guest guest]

Dawna

Adam never had a tube. But then again we didn't even know there was anything

'wrong " with him until he was two. He ate frequently and a bit at a time,

but I always felt he had a good appetite. In fact Dr. H. didn't even mention

putting weight on him when she saw him. I think that's pretty good for his

height. But I do know that my endo. told me he would not give us periactin.

You may have better luck. Better find out all the big pharmacy names for the

drugs before you go. I don't think our drug names always match those in the

US.

Deb

Questions regarding tubes

> Hi all,

> I have a few questions about feeding tubes. It seems that most of

> the kids have them. Can you tell me at what point they seem to need

> them? Our Ped wasn't following Noah that closely (will be now and

> I'm considering changing ... took me 3 mos to get the chomosome 7

> results that I'm sure were sitting there that long).

>

> Noah has never been sick and in hospital, he seems to eat but it's

> not much at a time, I'm getting really worried that we aren't doing

> enough except at the same time I'm worried that he will need a tube.

> Do you know what I mean? We were worried lately about hypoglycemia

> he's always been a sweaty little guy (but then my others are too)and

> lately he started waking in the night ... we've been giving him milk

> not knowing if it was his sugars or if it was just behavoural. Also

> since finding more info about RSS from here and Magic, I started

> putting a little corn starch in his milk before bed.

>

> I'm hoping the endocrinologist will shed some light next week when we

> go cause we don't see the ped until november. I'm also going to ask

> about that drug that starts with P for appetite. Sorry not up on all

> the names yet. I'm going to see if he'll check Noah's sugar when he

> does the other testing. We haven't been to the ped since the spring

> so I don't even know if NOah has gained weight or not.

>

> Do the kids eat too when they have tubes?

>

> Dawna

>

>

>

>

>

>

>

[Guest guest]

Dawna - Jen Salem here. Most of the RSS/SGA kids do not have g-

tubes, if that makes you feel better. I think that the listserve,

in general, probably has parents of more kids with serious issues --

probably because the parents of RSS/SGA kids with fewer issues,

maybe they don't think they need the listserve? For whatever the

reason, though, the listserve is probably not a typical

representation of RSS kids.

On that note, though, about 50% of the RSS kids have had either a NG-

tube or G-tube at some point; it drops to about 30% for ongoing g-

tubes.

However, unless a child is simply severely malnourished and in

trouble (Jodi Rollison can tell you great stories about her first

visit with Dr. H, and the incredible success her son has had with

his g-tube), there are other steps a family would take before

deciding on a g-tube.

I was in the same boat as you, literally just over 5 years ago. My

first postings to the listserve were the SAME question as you. We

flew off to see Dr. H in April of 2000, fully thinking that we were

going to have to put a g-tube in . Although she ate really

well, she hadn't gained any weight in a year (she was 4 1/2 years

old).

Dr. H told us that with kids who have pretty good appetites (she

reminded us that all 2-5 year olds go in spurts with eating), she

would always hesitate to put a g-tube in without trying other things

first. So first she had us try changing the composition of

's diet. She had us stop giving her so many foods high in

fat and sugar (we were doing the Pediasure and cheese, yogurt thing)

and go high in complex carbohydrates, and switch to 2% milk. I

would give at least one or two Reese's peanut butter cups a

day. I was thinking, hey, peanut butter is healthy and the

chocolate is high in calories. I didn't understand at that point

how much simple sugars can actually HINDER weight gain in our

children. Juice is an absolutele NO NO. Studies have actually

shown that in failure to thrive children, high juice content is one

of the biggest predictors of FTT.

With Dr. Hs changes, in the following 3 months, gained THREE

pounds. And this was from 27 pounds at 4 1/2 years old to 30

pounds, which is BIG jump, a 10% weight gain.

Then she didn't gain any more weight for a while (Dr. H called it

her " catch-up weight " so that is when we started growth hormone, and

also started cyproheptadine, an antihistamine as an appetite

stimulant -- since she clearly needed more calories to gain, but

with the GH, she was going to be growing at twice the rate.

Since that time, except for a one year period where we stopped the

cypropheptadine/Periactin and regretted it, she has slowly gained.

She is very thin, but considering how much height she has gained

with GH, we are pleased her weight has kept up.

It is an ongoing struggle, and that part does NOT get easier as they

get older, except that if they lose a pound with illness it isn't

catastrophic because they are 50-60 pounds. She has to take a

snackbag to school with her, and it stays on her desk. She eats on

average about 500 calories MORE a day than her peers, but definitely

eats small amounts more frequently. Her friends can eat 2-3 slices

of pizza. has delayed gastric emptying, so the food sits in

her tummy and hurts and makes her feel full. So she would eat 1

piece, then another piece an hour later.

MAGIC has some information on Periactin that Dr. Harbison wrote for

parents. Believe it is document H-27. Also documents H-26 and H-28

have information on why our kids are more prone to hypoglycemia and

describes how cornstarch at night helps prevent nighttime

hypoglcyemia (but also enlightens us as to why complex carbos are

helpful with these kids).

You have to be careful to balance the complex carbos with protein,

though, because the carbs pump up the blood sugar levels and can

drop down quickly them (although this is more likely to occur with

simple sugars).

Hope this helps a bit. Salem

> Hi all,

> I have a few questions about feeding tubes. It seems that most of

> the kids have them. Can you tell me at what point they seem to

need

> them? Our Ped wasn't following Noah that closely (will be now and

> I'm considering changing ... took me 3 mos to get the chomosome 7

> results that I'm sure were sitting there that long).

>

> Noah has never been sick and in hospital, he seems to eat but it's

> not much at a time, I'm getting really worried that we aren't

doing

> enough except at the same time I'm worried that he will need a

tube.

> Do you know what I mean? We were worried lately about

hypoglycemia

> he's always been a sweaty little guy (but then my others are too)

and

> lately he started waking in the night ... we've been giving him

milk

> not knowing if it was his sugars or if it was just behavoural.

Also

> since finding more info about RSS from here and Magic, I started

> putting a little corn starch in his milk before bed.

>

> I'm hoping the endocrinologist will shed some light next week when

we

> go cause we don't see the ped until november. I'm also going to

ask

> about that drug that starts with P for appetite. Sorry not up on

all

> the names yet. I'm going to see if he'll check Noah's sugar when

he

> does the other testing. We haven't been to the ped since the

spring

> so I don't even know if NOah has gained weight or not.

>

> Do the kids eat too when they have tubes?

>

> Dawna

[Guest guest]

Jen Salem, this was interesting reading. I've been following the

dietitian's advice: as much calories as possible. So, I add to his

food: vegetable oil for fat, 1/2 egg yolk for protein and MaxiJul

for carbohydrates. According to the dietitian it's OK to eat

choccolate and cakes because they are high on calories.

Instinctively I feel this might not be the best nutrition so he

doesn't have it regularely. But, you mean also fat will hinder

weight gain?

I try to give him a meal every 2,5-3rd hour, that is about what he

needs to get hungry and still leaves time to play and do other

things than just eat.

I would like to know what you mean by complex carbohydrates and in

what food you will find that?

One problem we have is that it is so difficult to get him to drink

enough! He only takes a couple of sips with lunch or dinner. All the

liquid he gets is from the nutrition drink, that he drinks 500-600

ml/day from. He definitely doesn't get enough liquid according to

his dietitian. But what can I do, nagging dosen't help. And I don't

want him to fill his stomach with drinks before he has finished his

food, then he won't eat.

But, most important, he is healthy and has more energy than many of

his friends!

Camilla, mom to Victor, 4 yrs 9 months, ca 92 cm 10.5 kg

> > Hi all,

> > I have a few questions about feeding tubes. It seems that most

of

> > the kids have them. Can you tell me at what point they seem to

> need

> > them? Our Ped wasn't following Noah that closely (will be now

and

> > I'm considering changing ... took me 3 mos to get the chomosome

7

> > results that I'm sure were sitting there that long).

> >

> > Noah has never been sick and in hospital, he seems to eat but

it's

> > not much at a time, I'm getting really worried that we aren't

> doing

> > enough except at the same time I'm worried that he will need a

> tube.

> > Do you know what I mean? We were worried lately about

> hypoglycemia

> > he's always been a sweaty little guy (but then my others are too)

> and

> > lately he started waking in the night ... we've been giving him

> milk

> > not knowing if it was his sugars or if it was just behavoural.

> Also

> > since finding more info about RSS from here and Magic, I started

> > putting a little corn starch in his milk before bed.

> >

> > I'm hoping the endocrinologist will shed some light next week

when

> we

> > go cause we don't see the ped until november. I'm also going to

> ask

> > about that drug that starts with P for appetite. Sorry not up

on

> all

> > the names yet. I'm going to see if he'll check Noah's sugar

when

> he

> > does the other testing. We haven't been to the ped since the

> spring

> > so I don't even know if NOah has gained weight or not.

> >

> > Do the kids eat too when they have tubes?

> >

> > Dawna