Re: Jodi Z: Question for parents of pre-teens/teens

[Guest guest]

Jodi, thanks! No, I definitely do NOT want to do a surgery. I was

hoping that there might be a miracle drug out there that increases

emptying time.... We are going to try and monitor 's tummy

size after major meals and see if it is that way with all or some.

We will have her checkup with her local GI here in Sept and then see

Dr. H in October, and then maybe we can put some answers together.

With 's blood sugar levels being so reactive, the delayed

emptying makes participating in sports VERY difficult. We can not

depend on giving her food to keep her blood sugars up in games

(softball isn't so bad, but soccer is a nightmare, and swim team,

yee gads). So we are going to have to move to using glocogel in her

cheek constantly. It isn't a fun thing to have to eat on a regular

basis, and I know there will be kickback.

I am less concerned about the possibility of eating issues in the

future, than I am with how to get weight on her now and how to

prevent the hypoglycemia that she gets (sudden onset) with her more

active spots. She is very talented in those three spots, and I

would hate to pull her back from any of them.

UGH! Jenn

> ,

>

> If you recall, Max had a pyloraplasty last year and he was 15.

But

> I would not rush into that surgery just yet unless there is

nothing

> else to do. Max STILL has delayed emptying despite the procedures

> he had done, so it may not be the solution to 's problem.

> Then again, it could help a lot and your problem would be solved.

> It's hard to tell.

>

> Has Dr. H. ever considered for Cisapride? That med is

> supposed to increase gastric emptying and help with reflux. The

> downside to it is that you would have to see her every 86 days or

> somewhere in there for a year. Then it increases to every 112 -

Max

> is there now. It has been a tremendously helpful drug for Max.

He

> was on it as a baby when there was a double blind study for it to

be

> approved by the FDA and now because of Dr. H. and her efforts, he

is

> able to be on it again.

>

> The other thing to consider, and it may be minor to you and me,

but

> major to , is the scarring that she would have on her

> abdomen. Would that bother her? And if you are going to do that,

> would you also do the fundo because of her reflux? But if you do

> that, you have to have a button placed because it is needed for

> venting for a few months - I believe about 6.

>

> There is a lot to consider. Have you talked to your

> psychologist/family therapist that Tyler is seeing? Perhaps with

> counseling she will not have the eating disorder that you fear.

> Surgery should be a last resort. (Remember what happened the last

> time she had surgery, too.)

>

> Jodi Z.

[Guest guest]

Jenn,

That miracle drug you are looking for is Cisapride. You really

should ask Dr. H. and/or your current GI about it. It is designed

to increase gastric emptying time.

I do understand about the sports that is so good with. You

cannot take her away from that. That, to me, would be more damaging

than anything else you could possibly do. She is so fortunate to be

talented in those areas. What confidence boosters they are!

Max's talents seem to be in Yu-Gi-Oh tournaments, Duel Master

tournaments and a little bit of acting. He is also strong in

personality, as in working a room to get what he wants - especially

with adults. These are not physical activities, though. I am

always trying to think of ways to get him to walk to things.

Fortunately, our " town " is just less than a mile away, so Max does

walk there when it is not too hot. I'm always trying to get him to

get up and move. That helps his stomach emptying, too. He, too,

gets a larger stomach when things are slowed down in there, but it

is not nearly as obvious with a boy. He wears tee-shirts that are a

bit big for him, so it hides his stomach well. He likes them big to

hide his button.

Jodi