Re: Informative Dr. H appt. ~LONG~ JODI

[Guest guest]

Hey Jodi!!

We've had these very same problems with . He started out severely

malnourished, and catabolic (consuming his own tissue to nourish his brain).

Once started to gain weight, (and it didn't happen overnight) it

seemed like he would just pack on the ounces!! At the time, he looked like a

normal, healthy, chubby baby to me, but now when I look back at picture of

that time, I can see just how FAT he really was!

When Bran moves too high on the weight-for-height scale, he tends towards

hyperglycemia (his BS stays consistently high). He also shows signs of

premature adrenarche, insulin resistance, and GH resistance, so in that way

he and are similar.

Since starting GH, Bran pretty much grew into his extra weight. As this

happened, his BS dropped down into Dr H's " normal " ranges on a regular

basis, his IGF-1s are lower, and his DHEA is more in line with what it

should be. He's also lost all signs of premature adrenarche. And all of this

happened just by lowering his weight to height ratio!! Pretty amazing if you

ask me!!

I also wanted to comment on what you said about weight to height ratio. For

, the 10th percentile is too high. He does better at the 5th

percentile or lower. So it IS a very individual thing!

And it's a complicated balancing act, especially for tube fed kids! We have

to keep good records of calories consumed both by tube, and orally. If, as

with , you're trying to push more food orally, then you have to

compensate by lowering tube feeds, but still make sure is getting

enough calories to maintain good growth. One thing that has worked for

with table food, is to mash it with a fork. Then he's still getting

texture, but doesn't have to chew as much to be able to swallow.

Thanks for the update. It's nice to know that there are others in the same

boat! LOL

Talk to you soon!

Pat (g-ma to , RSS, 4 yrs old, 28# 10.6oz, 35 " , G-Tube, GHT)

PS - Bran is currently at the 35-40% on the weight-for-height chart, so

we'll need to lower his pump rates some again. I think it has a lot to do

with the weather, and limited outside play! He needs more during the summer,

just to maintain, but then fall and winter come, and he puffs right up.

[Guest guest]

I have always said how similar and are.

I was wondering about the insulin and GH resistance and the

adrenarche, too. Dr. H. gave me the impression that the ticket out

of all of this would be to slim him down. I was wondering if I was

making the right assumption. But, based on your experiences with

, that is what will work. I am hoping so anyway. We will see

her in three months and hopefully he will be on the right track.

With being on GH three months by then, I am thinking and hoping that

will help.

Now, Pat, I need help with food. I know you were saying you mashed

things up for him and all, but I just don't know waht to do. Today,

I steamed four of those little carrots and cut them up. I could see

right away they needed to be smaller, so I chopped them more. Well,

I did end up having to mash them and he needed the baby food most of

the time in order to swallow them. He was just putting it all in his

front teeth. I kept telling him to move it to his big teeth in the

back and chew. He really is trying, but it is truly hard for him.

And, he only got two carrots down. Without the baby food to help

him, he wouldn't have been able to eat that much! I know you had

some trouble getting started on food. What was the key?

Just keep trying foods? Right now I am thinking to keep mashing food

like the carrots or green beans or something and then giving him the

bites of baby food to help. To gradually get him introduced to more

textured foods. Other than that, I have no idea what to do or WHAT I

am doing! I feel the pressure though, and that isn't good. I want

him to be able to eat. What kinds of things did you start

on? And, anyone else is welcome to interject here. I could use the

advice from anyone that has had to deal with the food and chewing

issues!

Thanks,

Jodi R.

>

> Hey Jodi!!

>

> We've had these very same problems with . He started out

severely

> malnourished, and catabolic (consuming his own tissue to nourish

his brain).

> Once started to gain weight, (and it didn't happen

overnight) it

> seemed like he would just pack on the ounces!! At the time, he

looked like a

> normal, healthy, chubby baby to me, but now when I look back at

picture of

> that time, I can see just how FAT he really was!

>

> When Bran moves too high on the weight-for-height scale, he tends

towards

> hyperglycemia (his BS stays consistently high). He also shows signs

of

> premature adrenarche, insulin resistance, and GH resistance, so in

that way

> he and are similar.

>

> Since starting GH, Bran pretty much grew into his extra weight. As

this

> happened, his BS dropped down into Dr H's " normal " ranges on a

regular

> basis, his IGF-1s are lower, and his DHEA is more in line with what

it

> should be. He's also lost all signs of premature adrenarche. And

all of this

> happened just by lowering his weight to height ratio!! Pretty

amazing if you

> ask me!!

>

> I also wanted to comment on what you said about weight to height

ratio. For

> , the 10th percentile is too high. He does better at the 5th

> percentile or lower. So it IS a very individual thing!

>

> And it's a complicated balancing act, especially for tube fed kids!

We have

> to keep good records of calories consumed both by tube, and orally.

If, as

> with , you're trying to push more food orally, then you have

to

> compensate by lowering tube feeds, but still make sure is

getting

> enough calories to maintain good growth. One thing that has worked

for

> with table food, is to mash it with a fork. Then he's still

getting

> texture, but doesn't have to chew as much to be able to swallow.

>

> Thanks for the update. It's nice to know that there are others in

the same

> boat! LOL

>

> Talk to you soon!

> Pat (g-ma to , RSS, 4 yrs old, 28# 10.6oz, 35 " , G-Tube, GHT)

>

> PS - Bran is currently at the 35-40% on the weight-for-height

chart, so

> we'll need to lower his pump rates some again. I think it has a lot

to do

> with the weather, and limited outside play! He needs more during

the summer,

> just to maintain, but then fall and winter come, and he puffs right

up.

>