Info to New /Xavier

[Guest guest]

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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.