Pattie - weight issues

[Guest guest]

I SOOOOO agree with you. Skinny doesnt bother me. The fact is that

my son, who is 13 months younger than , weighs almost the same

amount. He is in the 75%'tile for height and 15%'tile for weight.

But he doesn't look emaciated like she does. His ribs don't show.

She looks like she has just gone through a round of chemo or

something. I can't explain it. It's that gut feeling when you know

your child has hit their rock bottom in weight.

Re the Scandishakes, yes we may have to go back to that before

bedtime. However, one of the things that begged Dr. H is

that she stop drinking milk at bedtime, so that she could begin being

potty trained and not have to wear a pullup. She almost cried when

talking to Dr. H. And Dr. H. as usual, became this total teddy bear

with her. Squatted down and talked to her about how this was so

important to to be like her friends, could promise to

eat a Nite-Bite every night, and drink the milk other times in the

day. She wrote a contract between and herself as well,

comitting to this!!!! Every night, reminds us about the Nite-

Bite.

(Nite-Bite is a slow-timed-release glucose bar created for diabetics -

- it is like a high dose of cornstarch at night, but far more

expensive. $1 per night. About 130 calories and a very tiny

chocolate bar.)

So I made her drink these yogurt smoothies today, and then made her

one of the high calorie milkshakes tonight. I also started her back

on the Prevacid today. Her GI had asked that we stop it for a week

or two to see if we saw any change in her appetite (rather than doing

the ph probe for reflux). We are putting her back on it to see if

there is an INCREASE in her appetite. Cross your fingers.

But yes, you'll see her at the convention. She is the one on bird

legs that you can't figure out how they hold up her body!!! (but

they are solid muscle).

> > > > Are there any parents of kids who were eaters before, then

got

> G-

> > > > tubes (preferably at an age of 2yrs or older), are fed only

at

> > > night,

> > > > and what is the impact on their daytime eating.

> > > >

> > > > Our daughter has become pathetically thin, almost

scary

> > > > looking. Her energy level has seriously diminished. We have

> to

> > > make

> > > > some decisions. And one of the major reasons we are against

a

> G-

> > > tube

> > > > is that we saw with her central catheter line how once she

got

> > the

> > > > calories through that, she wouldn't eat during the day. So

we

> > had

> > > to

> > > > go to a 24-hour catheter.

> > > >

> > > > We don't want to have to go to a 24-hour or any daytime G-

tube

> if

> > > > possible. Thoughts?