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Re: Info to New /Xavier

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Hi Both s

My daughter is 14 month is NG tube fed only during the nights and

thats because she has strong bottle aversion and its not possible to

wake her every 4 hrs to spoon feed.Anyway, she eats fine during the

day with spoon. And I mix her formula to 27 cal/oz then add half jar

of #1 baby food (banana, prune, the higher calory ones) then rice

cereal, or sometimes only formula plus rice cereal. I have excel

spreadsheet set up to calculate the total calories (depending on what

goes in the mixture), and sometimes its as high as 160 calories for

120 cc (her usual intake), thats 40cal/oz. Is this too much for her?

She seems to tolerate fine. She had strong reflux but it much better

since she eats the gooey mixture and rarely spits up. I give her some

water inbetween in syringe. If she would only take the bottle in her

sleep like a lot of babies we could get rid of the NG tube.

Sabina mother of Naomi SGA may be RSS (born at 35 weeks at 3-15 lbs

and 15.5 inches, now almost 13 lbs 24 inches way below the charts

head circumferance always at 10%).

> -

>

> My name is Salem, and I am the volunteer co-division

> consultant for the RSS/SGA division at MAGIC. I saw your email

> earlier today, and forwarded some information to Easter Seals

DuPage

> (Chicago) to Cindy B., a registered nutritionist who has worked

with

> many of our kids in their clinic, and at the MAGIC convention the

> last 3 years. She just answered me with a VERY comprehensive note

> to you. (And everyone, this is good for other kids).

>

> But on a side note. Is it possible that you typed in his birth

> weight/length wrong? You wrote that he was 6lbs 14oz and 19 3/4

> inches long, and that he was SGA/IUGR. Neither of these two

> measurements are SGA (small for gestational age). To qualify for

> SGA, the child has to be under the 3rd percentile for either weight

> or length or both. But then later, you wrote something about how

he

> went from birth at around the 5th percentile to way below. So that

> made me think you have his birth info wrong, since the 5th

> percentile is about 5 1/2 pounds and 17.5 inches long or so (don't

> have the chart in front of me, so I am guessing). Can you clarify?

>

> Also, can you let me know what his siblings birth weight and length

> were? Most RSS children are both at under 5lbs or so and about 17

> inches long. But there are the rare few that are born at 6 1/2

> pounds, but almost always they have a sibling who was 9 pounds (so

> clearly they are still very underweight for their family). Also,

an

> RSS child's head is almost always on the growth charts in

> circumference -- usually 25-75th percentile (usually right at where

> the child's length should be based on their parents' height). A

> child who is NOT RSS but is SGA usually has a head that is more

> similar to whatever the birth length and weight are -- so the head

> tends to be more proportionate to the baby's size.

>

> Sorry to write so much! But I am going out of town tomorrow so I

> wanted to get all this down.

>

> Now, the important stuff. Here is the information from Cindy.

>

> FROM CINDY: Is Xavier 14 months chronological age? Or is he

> younger (in her email she mentions she wants info for " babies " ).

If

> he's less than 12 months corrected age - he needs to stay on infant

> formula that can be concentrated up to 30 calories per ounce with

> additives. Up to 24 calories per ounce with formula, and beyond

> that with something like Duocal. If he needs his formula thicker -

> then that thickener or rice cereal is already concentrating the

> formula's calories. I'm just wanting to stress the importance of

> NOT going over 30 calories per ounce.

>

> If he's older than 12 months adjusted then he can go to a pediatric

> formula, which is usually 30 calories per ounce. However, since he

> is allergic to milk, he needs soy, and a pediatric soy formula is

> essentially non existent. There are versions for adults - which

can

> be used with kids over 2 years of age. So, use of a toddler soy

> formula, concentrated, or in a soy milk is a possibility. Depends

> on how much food - if any - he's eating. If he's eating food, then

> using Next Step Toddler or Isomil 2 - in water or soy milk is an

> option. If he's not eating, then the formula needs to be

> concentrated like an infant formula. If he's eating some then it

> depends on how much, and what, to know how much he needs to make up

> in formula form.

>

> JENNIFER HESS - I (Jen Salem) will be back from New York after the

> weekend, you can email me privately, and I can forward any

questions

> to Cindy.

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,

My son Max is also allergic to milk and has been since he was an

infant. We were told to use Peptamen Jr. for him. I know that the

label says it contains casseine, or whey, or whatever (I don't have

the can in front of me), but we were assured by the allergist and GI

doctors that it is broken down in a way that makes it hypo-

allergenic. Check with your doctor. It has 30 cals./ounce.

Max cannot tolerate soy, either. It's not an allergy, but his

stomach just does not digest it well. Now he drinks only rice milk.

I'm sure there are other formulas without milk, too. And they have

extra calories/ounce as well. If I think of them, I'll let you know.

Jodi Z.

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