Re: Questions regarding tubes - Camilla

[Guest guest]

Camilla - there really isn't a right or wrong answer. Some kids

simply won't eat anything but certain foods. BUt again, if we give

our kids sugary foods all the time, we painfully learned that is all

they will want.

was 4 yrs 9 months when we started GH in October of 2000.

She was 30 pounds and 38 inches tall. At 4 1/2, she was 27 pounds

and 37 inches tall, and way off the charts. My calculations show

that your son is 36 inches and 23 pounds, so he is quite small, even

for an RSS child. So unless you and Victor's father are

significantly less than average height, then Victor definitely needs

a lot of catch-up growth. You may both be very short, in which

case, ignore this.

HA!

I just emailed Dawna with info about complex carbohydrates. One

thing about these nutrititional drinks. literally got about

60-70% of her calories from age 3 to 4 1/2 from Pediasure. We truly

have no idea how we would have gotten through that period without

it. But we often wonder now if that was also part of the problem.

Pediasure is VERY high in sugar, and tastes great. Wouldn't you

want to drink a milkshake type drink all the time, instead of eating

yucky old food? Hmmm. Makes one wonder.

Dr. Harbison recommends,when a child will drink it, whole milk mixed

with half and half to increase calories (so it doesn't have the

sugar of the Pediasure type drinks). Some parents, in making that

transition, will add a certain amount of the Pediasure et al into

the milk, gradually over several weeks, reducing the amount of

Pediasure et al.

That being said, we also don't want our kids to drop in weight. So

it truly is a toss up. Regarding food additives, I have been told

that Canola Oil is better than vegetable oil -- it has the better

fats, is pretty tasteless and is about 80 calories per tablespoon.

Vegetable oil isn't ideal, we were told.

Your nutritionist recommending chocolate and cakes. Hmmm. I guess

it depends. Is he eating other foods and the chocolate or cakes is

a special treat in between meals? Is it every day or every couple

of days. A handful of pretzels or goldfish would probably be a lot

better than a candy bar, even if it was half the calories. Maybe

ask your nutritionist about this?

Some of the more recent studies I have been reading have really

talked about the adult RSS and SGA'ers struggling with being

overweight, even when they were in the bottom 1/3 of BMI in

childhood!!! Because our kids have a higher risk for developing

metabolic and cardiovascular health problems as adults, I am now a

firm believer in being more cautious about what they eat as children.

Toddlers? Less concerned. At that age we are desperate to get

anything into them. HA! But in childhood, these kids develop

eating habits and already begin to develop abdominal fat cells that

will stay with them for life.

Our nutritionist literally had me driving to Taco Bell or El Pollo

Loco (pinto beans and rice) every day -- she thought that the

calories from that were far better than the Hershey's chocolate bars

and Reeses Peanut butter cups I was giving her.

Again, though, every kid is different. On a side note, Pinto beans

are great for 1-2 year olds. You can spread them on a highchair

table or whatever it is you call that thing, and a 1-year old can

pick them up in their little fingers and eat them. Good motor skill

practice and eating protein all at once.

> > > 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