Achieving Balance - Kim

[Guest guest]

Hey Kim,

What I'm looking for is a way to achieve some balance in 's diet. He

is currently on EleCare 30kcal/oz. This is a predigested, elemental formula

that provides complete nutrition. But then, trying to get to take

oral feeds throws the whole thing off, especially because he eats mainly

carbs.

The only advice I've gotten is to become a " carb " counter, change his oral

intake of carbs to complex carbs (which he won't eat!), and to up his oral

intake of proteins (another thing he won't eat! LOL)!! It's all SO

confusing, and with the limitations on WHAT will eat, it makes it

all that much harder!! No matter how " good " a food is for him, if he won't

eat it, it's no good! No one will tell me just how many grams of

carbs/complex carbs he should be taking in, how much protein he needs to

maximize growth. We're not even sure about how many kcal/kg/day he needs

anymore!! He was doing 80kcal/kg/day, but then he lost weight, and no one

will tell us what to shoot for with total daily caloric intake! Part of the

problem is that the smallest of changes, make big differences for ,

so we have to be very careful what we change, and how big the change is!!

One of my biggest concerns is that he lost approximately 1/2 a pound in the

last 3 months. With , this really isn't a big deal, he was

" over-weight " before. But he is now sitting very close to the

weight-for-height percentage that Dr H wanted, and I don't think he needs to

lose any more weight. The change in his face was dramatic!! Went from pudgy

to slender in not time at all!

Any suggestions are totally welcome! LOL

Pat (g-ma to , RSS, 3 yrs old, 23.5# (10.7kg), 32.8 " (83.3cm),

G-Tube)

[Guest guest]

Hi Pat,

I understand your confusion about what to do with . is already

way

ahead of where was at his age in terms of eating. only

willingly started

to eat some things after going to the feeding program. I never got advice about

how many

grams of carbs & proteins needed, but I do have a record of how many

calories/

kilo he needed at various weights. Keep in mind though, at the time, I did not

know he

had RSS, and we believed he needed the extra calories due to an unknown growth

disorder

& the amount of extra calories he burned from the difficulty he had breathing

(on oxygen,

fast pulse & respirations). I see that is 23.5# now at 3 years old.

When

was that weight, he was about 33 months old and was 30.75 " , so he was shorter &

fatter

than . This was probably the only time in his life, he actually had some

meat on

him. At that time, he was getting about 85 calories/kilo. Contrast that to now

where he

has been in the same weight range for at least 3 years (anywhere from 46 - 49

lbs.). Prior

to upping his feeding schedule this week, I calculated that he was getting about

69

calories/kilo. We just increased him & he has already gained a pound. He is

now getting

103 calories/kilo. I think once he gains enough weight, he won't need that much

anymore

& we can drop him back down a bit. Doctors/nutritionists have not told me for

many

years now how many calories/kilo he needs, but looking back at his growth chart

over the

years, he seems to have always needed in the mid 80's to 90's to gain. I am

sorry I can't

answer your question about how to get him to eat the " right " kind of carbs &

proteins as

has the same problem. I'll basically take anything I can get from him

in terms of

eating. You know the problem is the same for my younger son, , who is 4

years

old. He does not have RSS, but he is an extremely picky eater & lives off of

carbs too. He

is as stubborn as can be when it comes to trying something new. If he doesn't

like the

way it looks, he isn't going to it, and there's nothing you can do to get him to

try it. I

think you just need to watch 's weight, and if you have a record of

weights &

heights at various ages as well as a general idea of how many calories he was

consuming

at those times (figuring this out via the g-tube is pretty easy), you can look

at the period

in which his growth/weight gain was the best & go from there. Sorry I couldn't

be of more

help!

Kim C.

> Hey Kim,

>

> What I'm looking for is a way to achieve some balance in 's diet. He

> is currently on EleCare 30kcal/oz. This is a predigested, elemental formula

> that provides complete nutrition. But then, trying to get to take

> oral feeds throws the whole thing off, especially because he eats mainly

> carbs.

>

> The only advice I've gotten is to become a " carb " counter, change his oral

> intake of carbs to complex carbs (which he won't eat!), and to up his oral

> intake of proteins (another thing he won't eat! LOL)!! It's all SO

> confusing, and with the limitations on WHAT will eat, it makes it

> all that much harder!! No matter how " good " a food is for him, if he won't

> eat it, it's no good! No one will tell me just how many grams of

> carbs/complex carbs he should be taking in, how much protein he needs to

> maximize growth. We're not even sure about how many kcal/kg/day he needs

> anymore!! He was doing 80kcal/kg/day, but then he lost weight, and no one

> will tell us what to shoot for with total daily caloric intake! Part of the

> problem is that the smallest of changes, make big differences for ,

> so we have to be very careful what we change, and how big the change is!!

>

> One of my biggest concerns is that he lost approximately 1/2 a pound in the

> last 3 months. With , this really isn't a big deal, he was

> " over-weight " before. But he is now sitting very close to the

> weight-for-height percentage that Dr H wanted, and I don't think he needs to

> lose any more weight. The change in his face was dramatic!! Went from pudgy

> to slender in not time at all!

>

> Any suggestions are totally welcome! LOL

> Pat (g-ma to , RSS, 3 yrs old, 23.5# (10.7kg), 32.8 " (83.3cm),

> G-Tube)