Re: Questions for the Group-Justen's mom

[Guest guest]

Hi Justen's mom!

My name is Pat, and I am g-ma to . He's currently 3yr 9m, and had his

g-tube placed when he was 8.5 m of age. is just starting to do

better with his oral eating skills, but Bran NEVER WAS a good eater. When

Bran's tube was placed he was extremely emaciated because of his poor eating

habits, and the severe oral aversions that stemmed from having to force feed

him.

One of the MAJOR myths going around, is that placement of a g-tube will stop

a child that eats, from eating. This DOES NOT have to be the case. The

g-tube can be used to supplement the child with extra calories overnight,

and that does not necessarily have to curtail daytime eating. Most g-tube

kids that I know, that are supplemented overnight, might not eat as well at

breakfast, but generally seem to pick up during the day.

As far as school goes, Bran wears his pump in a backpack (converted camera

case so it's size appropriate) because he's on continuous feeds (he is fed

by his tube around the clock due to severe fasting hypoglycemia). This

doesn't seem to curtail his activities in the least, and none of the other

kids even seem to notice. For a child that is only on supplemental feeds

(overnight) they wouldn't be hooked up during the day, so it shouldn't

curtail their activities in the least.

We did have to hold a " training " session with the school personnel that

would be taking responsibility for him on how to run the pump, tape his

tubing, and replace his button if that were necessary, but it hasn't been so

far.

Bran is also on GH. GH does seem to help stimulate appetite in some kids,

but not all. If you're already having problems with gaining weight, I would

hold off on starting GH until that problem is resolved. The problem with

starting GH too soon, is that most kids increase their growth velocity by

1.5-2 times their " normal " rate. If your child cannot gain weight at the

same increased rate, then their weight-for-height ratio will drop, and

they'll become too thin.

Dr H usually recommends that the child complete their " caloric catch-up "

before they begin GH. For Bran, this meant his linear growth stalled while

his weight kept increasing for a period of several months. This happens for

different kids at different ages. It is a very individualized event. Once

caloric catch-up is attained, GH has a better chance of doing it's best work

for our kids. Dr H is fond of saying that kids can't grow on air. Well, GH

doesn't work as well, if the child can't consume enough calories to help the

body utilize it.

I hope this helps. I know that the thought of a g-tube is really scary for

most parents, but I have to say I agree with , you have to remember

that this is about what's best for your child. Most families that have

chosen the g-tube route have NO REGRETS whatsoever, and are amazed at the

amount of relief they feel when all is said and done.

HUGS!!!

Pat (g-ma to , RSS, 3 yrs 9 months old, 24.5#, 34 " , G-tube, GHT)

[Guest guest]

Go Pat, I agree with everything she said about the g-tube. What a great

grandma.

Judy

Re: Questions for the Group-Justen's mom

> Hi Justen's mom!

>

> My name is Pat, and I am g-ma to . He's currently 3yr 9m, and had

> his

> g-tube placed when he was 8.5 m of age. is just starting to do

> better with his oral eating skills, but Bran NEVER WAS a good eater. When

> Bran's tube was placed he was extremely emaciated because of his poor

> eating

> habits, and the severe oral aversions that stemmed from having to force

> feed

> him.

>

> One of the MAJOR myths going around, is that placement of a g-tube will

> stop

> a child that eats, from eating. This DOES NOT have to be the case. The

> g-tube can be used to supplement the child with extra calories overnight,

> and that does not necessarily have to curtail daytime eating. Most g-tube

> kids that I know, that are supplemented overnight, might not eat as well

> at

> breakfast, but generally seem to pick up during the day.

>

> As far as school goes, Bran wears his pump in a backpack (converted camera

> case so it's size appropriate) because he's on continuous feeds (he is fed

> by his tube around the clock due to severe fasting hypoglycemia). This

> doesn't seem to curtail his activities in the least, and none of the other

> kids even seem to notice. For a child that is only on supplemental feeds

> (overnight) they wouldn't be hooked up during the day, so it shouldn't

> curtail their activities in the least.

>

> We did have to hold a " training " session with the school personnel that

> would be taking responsibility for him on how to run the pump, tape his

> tubing, and replace his button if that were necessary, but it hasn't been

> so

> far.

>

> Bran is also on GH. GH does seem to help stimulate appetite in some kids,

> but not all. If you're already having problems with gaining weight, I

> would

> hold off on starting GH until that problem is resolved. The problem with

> starting GH too soon, is that most kids increase their growth velocity by

> 1.5-2 times their " normal " rate. If your child cannot gain weight at the

> same increased rate, then their weight-for-height ratio will drop, and

> they'll become too thin.

>

> Dr H usually recommends that the child complete their " caloric catch-up "

> before they begin GH. For Bran, this meant his linear growth stalled while

> his weight kept increasing for a period of several months. This happens

> for

> different kids at different ages. It is a very individualized event. Once

> caloric catch-up is attained, GH has a better chance of doing it's best

> work

> for our kids. Dr H is fond of saying that kids can't grow on air. Well, GH

> doesn't work as well, if the child can't consume enough calories to help

> the

> body utilize it.

>

> I hope this helps. I know that the thought of a g-tube is really scary for

> most parents, but I have to say I agree with , you have to remember

> that this is about what's best for your child. Most families that have

> chosen the g-tube route have NO REGRETS whatsoever, and are amazed at the

> amount of relief they feel when all is said and done.

>

> HUGS!!!

> Pat (g-ma to , RSS, 3 yrs 9 months old, 24.5#, 34 " , G-tube, GHT)

>

>

>

>

>

>

>