Re: A little help for convention

[Guest guest]

,

Glad to know you are coming to convention. I wanted to pass on some

information that I am sure you will hear from Dr. H. She is not a

fan of Pediasure. It is heavy (molecular wise) and sits in our kids

stomach a long time. Their bodies have to pull water into the

stomach to dilute it and then go through a usually slow GI system.

All this means an appetite killer.

I know that my son Matt (who is now 7) was on Pediasure when he was a

toddler, but I took him off since I noticed if he drank those 240

calories, he wouldn't eat/drink anything else.

At convention last year Dr. H talked about mixing a toddler formula

with whole milk. All my notes are in transit to our new house so

maybe somebody has that information and will post.

I am NOT telling you to take him off the Pediasure, you need to look

into your options. BUT, I am pretty confident that Dr H will tell

you this at convention so be prepared. There may be better options

for calorie intake and still retain some appetite.

Beth H

Mom to Matt, SGA

> Howdy Folks,

>

> here. I am planning on attending this year's convention and I

> was wondering if anyone in the Chicago area who is attending

> wouldn't mind picking up some generic, WAlMART variety, Pediasure.

> The generic kind is called " Parents Choice. Flavor: Vanilla. I

> would gladly reimburse you for the four cases we need. THere are 6

> cans to a case. It would be so much easier to have this waiting at

> convetion than transporting it in the luggage if you all know what

I

> mean. Connor just lives on this stuff and it's been the only thing

> keeping his weight on.

>

> Sigh, speaking of eating and weight issues.

>

> Is it normal for our kids to get more resistent to food the older

> they get? Connor will eat, but the serving sizes are getting

> smaller and smaller. I can measure food intake by the tablespoon

on

> most days. I use to be able to get gobs of calories in this kid.

> Not anymore. His growth chart right now is tracking in between the

> RSS curve and a regular child's curve. I go in tomorrow for a

weigh

> in, but last time he was 15 lbs 7 oz and 28 3/4 inches long. I do

> know that teething of late has really affected his appetite and

> ability to chew.

>

> A good day looks like this.

>

> 6:00 a.m. bottle of Pediasure 6-8 oz. (He's shaking like a leaf

when

> I hand him his bottle)

> 8:30 Breakfast 2 tbls. of dry cheerios. cheese crackers. Bottle to

> suck on.

> 10:00 snack two bites of banana with one lick of peanutt butter.

> 11:00 Nap with a bottle 4 oz usually.

> 1:30 Lunch 3/4 mozzarella cheese stick, four bites of a cooked hot

> dog.

> 3:30 snack 1/4 cup vanilla pudding with duocal mixed in. He never

> finishes it.

> 5:00 dinner 1/4 cup of some cooked meat. a few bites of mashed

> potatoes with butter and duocal and half n half mixed in.

> 8:00 p.m. We give a 8 oz bottle to go to bed with.

>

> I know, I know, we are breaking all the dental rules with the night

> time bottle, but, on most mornings, that bottle is empty and Connor

> works on it all night. I really feel like these extra calories at

> night are staving off hypoglycemia even though he can still be a

bit

> shaky on some mornings. Chronologically, Connor should be getting

> off the bottle. Yes, he can use a straw, but he won't keep up with

> it and thus his pediasure intake goes down. I don't want to

> compromise the only thing that's keeping any type of weight on him.

> Connor won't eat any kind of vegetable. Yes we are on Periactin.

> Yes, we have talked about the g-tube issue. So far, Connor's head

is

> growing at a normal rate. It's the only thing growing at a normal

> rate thus that's why his GI doc says don't tube him yet. Connor is

> extrememly active, curious, in to everything kind of baby. You

> can't turn your back on him for a minute for he will find the most

> dangerous thing to do and fall immediately in love with it.

> Developmentally, all the therapists say he's ahead of schedule.

> He's saying new words all the time and even a few sentences.

>

> Should I worry. I don't know.

>

>

> Mom to Graham 7; Cameron 4; Connor 19 months IUGR SGA/RSS

Periactin,

> Zantac, Assymetry in left leg.

[Guest guest]

hi mary!!

i have to agree with everyone else. my ped said many times not to

give christopher pediasure, that it would just make him take in less

since it would fill his belly up with liquid. but like jodi said i

wouldnt do anything without talking to your dr first!!! that said, i

live in NJ and will be driving to convention, if you would like i

can pick it up for you and put it in my van so you will have it if

you are still using it at that time. just let me know, email at

jlcals2003@ yahoo.com (no space of course). good luck!!

jodie

(nicholas-6 nonrss, christopher-3 rss 23lbs 8.5oz 33 " assmentry

(left side) 1cm, periactin, ght(on hold until july), ADHD

(possible), johnathon-11m nonrss)

PS- christopher woke in the middle of the night for a bottle until

he was 2 (i know way pass when he should be getting one, but i think

this is why we never had hypo troubles) he still sometimes wakes for

a bite to eat (usually 2 oreos and some juice). i alos fed him every

2-3hrs and he still eats that way.

[Guest guest]

I had gooten a different opinion on this from my endo. Only Liam's Endo

perfers Carnation Instant Breakfast, but I could use pediasure if I wanted

to (I use CIB, it's cheaper and tastes better).... Liam's Endo said... That

since Liam does not like to eat to begin with and the foods he does eat are

not the greatest ( he has Sensory issues) it is better to supplement 1 to 2

meals a day with the CIB. This way he is getting the calories and nuterients

that he needs, because he is not getting it from the little amount of foods

he eats.

Mom to Liam (3 1/2 years old 34 3/4 " 27 lbs

SGA, Hypothyriod, Epilepsy.) Started GHT 5/18/04

and Jed (11 years old)

[Guest guest]

Hi , While I don't know anything about Pediasure (milk

allergies), we did have Olivia on the bottle until her 3rd

birthday. WELL over the usual time, we didn't get an RSS diagnosis

until she was 3yrs, 3 mths but I'm so happy that we left her on the

bottle that long, she was hypoglycemic even with it (we just didn't

know that it was hypo-g, thought that she sweated a lot then

shivered). As for the teeth, yes it is bad for them but poor

nutrition is worse for the whole body ( my opinion). She just went

through her dental surgery with flying colors and although her teeth

were bad because of the bottle (very back molars are last to come in

yet first to decay = baby bottle mouth) it was made worse because of

the Osteogenesis Imperfecta (brittle bone disease).

If I had to do it all over again I'd leave her on the bedtime

bottle longer than 3 since she didn't gain one single ounce in 1.5

yrs after we took her off. She is however responding well to the

Cyproheptadine (periactin), in 3 1/2 weeks she's gained almost ONE

POUND!! We're thrilled!

Best of luck and thanks for the great fundraising tips before, our

fundraisers were fantastic and went off without a hitch!!

Leah, mom to Ash 9, and Olivia 4.5, RSS, OI, 19lbs, 33 " , lactulose,

senokot, zantac, cypraheptadine (periactin)

> Howdy Folks,

>

> here. I am planning on attending this year's convention and

I

> was wondering if anyone in the Chicago area who is attending

> wouldn't mind picking up some generic, WAlMART variety, Pediasure.

> The generic kind is called " Parents Choice. Flavor: Vanilla. I

> would gladly reimburse you for the four cases we need. THere are

6

> cans to a case. It would be so much easier to have this waiting

at

> convetion than transporting it in the luggage if you all know what

I

> mean. Connor just lives on this stuff and it's been the only

thing

> keeping his weight on.

>

> Sigh, speaking of eating and weight issues.

>

> Is it normal for our kids to get more resistent to food the older

> they get? Connor will eat, but the serving sizes are getting

> smaller and smaller. I can measure food intake by the tablespoon

on

> most days. I use to be able to get gobs of calories in this kid.

> Not anymore. His growth chart right now is tracking in between

the

> RSS curve and a regular child's curve. I go in tomorrow for a

weigh

> in, but last time he was 15 lbs 7 oz and 28 3/4 inches long. I do

> know that teething of late has really affected his appetite and

> ability to chew.

>

> A good day looks like this.

>

> 6:00 a.m. bottle of Pediasure 6-8 oz. (He's shaking like a leaf

when

> I hand him his bottle)

> 8:30 Breakfast 2 tbls. of dry cheerios. cheese crackers. Bottle to

> suck on.

> 10:00 snack two bites of banana with one lick of peanutt butter.

> 11:00 Nap with a bottle 4 oz usually.

> 1:30 Lunch 3/4 mozzarella cheese stick, four bites of a cooked hot

> dog.

> 3:30 snack 1/4 cup vanilla pudding with duocal mixed in. He never

> finishes it.

> 5:00 dinner 1/4 cup of some cooked meat. a few bites of mashed

> potatoes with butter and duocal and half n half mixed in.

> 8:00 p.m. We give a 8 oz bottle to go to bed with.

>

> I know, I know, we are breaking all the dental rules with the

night

> time bottle, but, on most mornings, that bottle is empty and

Connor

> works on it all night. I really feel like these extra calories at

> night are staving off hypoglycemia even though he can still be a

bit

> shaky on some mornings. Chronologically, Connor should be getting

> off the bottle. Yes, he can use a straw, but he won't keep up

with

> it and thus his pediasure intake goes down. I don't want to

> compromise the only thing that's keeping any type of weight on

him.

> Connor won't eat any kind of vegetable. Yes we are on Periactin.

> Yes, we have talked about the g-tube issue. So far, Connor's head

is

> growing at a normal rate. It's the only thing growing at a normal

> rate thus that's why his GI doc says don't tube him yet. Connor

is

> extrememly active, curious, in to everything kind of baby. You

> can't turn your back on him for a minute for he will find the most

> dangerous thing to do and fall immediately in love with it.

> Developmentally, all the therapists say he's ahead of schedule.

> He's saying new words all the time and even a few sentences.

>

> Should I worry. I don't know.

>

>

> Mom to Graham 7; Cameron 4; Connor 19 months IUGR SGA/RSS

Periactin,

> Zantac, Assymetry in left leg.