Re: Questions regarding tubes -

[Guest guest]

Wow .. Thank you for putting into perspective how many kids have more

serious problems. I have been reading ALL of the messages and

thinking that we are quite fortunate that he " seems " to be eating and

less affected, but on the other hand worrying that I'm missing

something and that he's not doing as well as I think. More frequent

doctors appointments are going to help and I am going to make sure

one way or another that we are following his progress better.

We do feed Noah alot of cheese and yogurt and peanut butter, just

like you did thinking that these are the best. Do you have some

examples of high in complex carbs foods? I do give him juice (not in

huge amounts) but a maybe 4 ounce glass to help keep him regular. I

would know, wouldn't I, by him being uncomfortable, if he had acid

reflux or delayed gastric emptying? He doesn't seem to be

uncomfortable or in pain except if he's a little constipated.

Thanks for the recommendations of articles too ... after emailing

Katy last week, she sent me the list and I called on Friday to have

about 11 or so mailed to me. 26, 27 and 28 are among them thank

goodness.

Again thanks to everyone for the helpful responses and hopefully

we'll get everything figured out in the next little while and calm

the nerves a little.

Dawna

> > 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 - Ian does not have a g-tube. He has been able to maintain

his caloric intake with a supplemental drink and eating (he eats

great some days and not others) - we have determined that if Ian did

not have his supplement, however, he would have probably had to have

the g-tube because he could not eat enough by mouth to sustain his

caloric intake. HOWEVER, we are hoping at our appointment with Dr.

H this month that we will have similar discussions as Jen Salem did

because we too are doing the high calorie (chocolate stuff) and not

so much the good for you stuff. I'm looking forward to getting rid

of donuts, chocolate, and cookies out of this house!!!

- H

> > > 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]

... what kind of supplemental drink do you give him? Geese

I'm thinking I need to move to southern Ontario to get closer to Dr.

H. and New York... or at least closer to the specialists down there

in Ontario. You know it wouldn't be so bad being closer to my family

too!

Dawna

> > > > 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]

I will try and answer the questions you wrote.

> We do feed Noah alot of cheese and yogurt and peanut butter, just

> like you did thinking that these are the best. Do you have some

> examples of high in complex carbs foods? ANSWER: The easiest way

is to look at the back of the label. It will list Total Carbs and a

number, and then Other Carbs and a number and Sugar and a number

(usually). You want " sugar " to be less than 50% of the Total, and

the smaller that number is, the more " complex " the carbohydrate is.

Since was only 4 1/2 and food choices were tougher than now,

Dr. H had me concentrate on things like crackers, Ritz Bits with

peanut butter, cheddar popcorn (which actually has no trans fat

now), beef jerky, almonds & other nuts, and BEANS for protein

(actually, on that note, the nutritionist told us the best fast food

for was Taco Bell, and getting a small container of Pinto

Beans n Cheese, and a small Rice. Good protein and carbs. And they

don't use animal lard.

Anyway. Some granola bars are higher in sugar than others so you

have to look. Whole wheat Cheerios as a snack? Lots of different

crackers. But again, you have the trans fats in a lot of these. To

be honest, at 4 1/2, that was the least of our worries!!! HA! Now,

however, I do try and stick to the brands that have no trans fats,

and a lot more companies are moving that way.

>I do give him juice (not in huge amounts) but a maybe 4 ounce glass

to help keep him regular. ANSWER: I don't think that 4 ounces is

bad; it is just that juice/sugar fills up the child and they tend to

not want to eat foods. So they recommend that you not give the

child juice with a meal. Let him eat food, and then have juice as a

snack after.

> I would know, wouldn't I, by him being uncomfortable, if he had

acid > reflux or delayed gastric emptying? He doesn't seem to be

> uncomfortable or in pain except if he's a little constipated.

ANSWER: Sadly, no, you wouldn't know once they are toddlers. Did

he ever have reflux as an infant? Most of us whose children have

silent reflux did have reflux as infants but seemed to outgrow it.

But many of our older children, once they were put on a medicine

like Zantac or Prevacid, describe the burning in their chest that

they had always had before but thought was " normal. " The problem is

that our toddlers don't complain because they don't know that the

pain isn't abnormal -- they have always had it. The question

becomes, do you go through testing to diagnose? Or do what others

have done -- have the pediatrician prescribe Zantac, try it for 2

weeks, and see if the child gains any incremental weight. If they

gain, you probably have your answer for reflux.

>

Hope these answers help, Dawna. I hope to meet you and your son

someday at a future MAGIC convention. Salem

[Guest guest]

Dawna - Ian's nutritionist subscribed Nutren Jr. w/Fiber. It's

actually also used for tube feedings - but, Ian likes to drink it.

It actually tastes really good!

- H

> > > > > 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]

Well of course Deb that goes without saying!

> > > > > > 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]

Deb - don't you think Dawna should have her choice on which Niagra

Falls she wants to live next to?? LOL LOL

Here ! ! ! ! ! ! ! ! ! ! ! Hope these help! LOL

- H

> > > > > > 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]

CACK

I am just sitting here reading the emails, watching " House' and eating a

cheese sandwich and I come across more exclamation marks and this email and

I almost chocked on my cheese sandwich! ! ! ! ! ! ! ! ! ! ! Geez

{do you recognize the exclamation marks???}

LOL LOL LOL LOL

Deb

Re: Questions regarding tubes -

> Deb - don't you think Dawna should have her choice on which Niagra

> Falls she wants to live next to?? LOL LOL

>

> Here ! ! ! ! ! ! ! ! ! ! ! Hope these help! LOL

>

> - H

>

>

> > > > > > > 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]

Well, that cheese sandwichc has to be more nutritious than the two

oreo cookies, 1/2 a can of smoked almonds, and a sprite. I swear -

if I keep this up..........I can't even think about it! LOL I've

gained 6 pounds since I moved here! Need any questions marks? I

have lots of those too! LOL

- H

> > > > > > > > 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

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >