Emokie,

My son has CP and had reflux and failure to thrive (FFT).  At 14 months, we
had fundoplication and gtube.  There are a couple of types of fundo - Nissen
and Thal are the ones I know about.  The Nissen involves wrapping the top of
the stomach, called the fundus, around the bottom of the esophagus, and
stitching it in place.  This is the most popular form.  The Thal was what
our son had - it involves wrapping the fundus only partially around the
esophagus.  The Nissen makes it impossible for the child to vomit or burp.
With the Thal, he should someday learn to burp.  This is the theory, anyway.
I believe both forms can be done laparoscopically, so that no large incision
is needed.

We got the fundo and gtube with the understanding that the gtube would be
temporary - it would allow us to give him nutrition while he healed from the
fundo, and as soon as the feeding got better, we could take it out.  For us,
the surgery has not worked out very well.  There are a lot of people who've
had good luck with it, too, though.  We did the surgery 4 months ago - and
by now he should have recovered.  What we're finding is that the feedings
through the tube have replaced oral feedings - and that they don't go well
for him.  If we give him a tube feeding - even as little as 2 oz - he
retches and gags, as though he's vomitting - even though he doesn't bring
anything up.  So we ended up with a nighttime pump feeding, at a rate of 1
to 2 oz / hr - and sometimes he retches with that, too.  His weight gain is
just as poor as it was before the surgery, and his quality of life is worse.
That is probably not the typical result, but the doctors sure never
mentioned that anything like this was a possibility.  They talked about the
gtube taking the pressure off feedings.  And that he would get over his
eating aversion when the reflux was stopped by the fundo.

I'm not suggesting that your child shouldn't have these procedures done -
just that your eyes be wide open to the possibilities before you agree to
the surgery.  Also, I'd recommend the gtube list to you - it's got parents
of children with g and j tubes, and adult with tubes, too.  These people
have lots of knowledge about the complications of life with a tube -
granulation tissue management, equipment problems, formula options...  They
have really helped us out a lot - much more than the doctors or the GI
clinic.

The gtube list is [log in to unmask]

Good luck

Dianne
Mom to Reese 6 NDA and Evan 18 mo spastic diplegia fundo gtube

----- Original Message -----
From: <[log in to unmask]>
Sent: Thursday, October 07, 1999 7:06 PM
Subject: Re: Updated website


> I am new to this and not real comfortable about giving my name but I am
the
> mom of a 15 mo. old son with cp he was born at 26 weeks and weighed 2lbs 4
> oz, he has been dealt a very hard hand so far  he had nec and was operated
on
> at 59 days old but he was lucky in that his appendix was the only thing
> affected so it was removed. he also has periventricular lucomalasia or pvl
so
> we are trying to teach the unhealthy parts of his brain to work for the
> healthy parts, he also has limited sight, our new challenge is to decide
> whether to have a g-tube placed or not any info on this would be
appreciated,
> the doctors are also discussing an operation called a fundoplycation, this
is
> to make the opening of his stomach smaller so he is unable to vomit, but I
am
> so hesitant about this please feel free to share this with anyone who has
> been through it or can give some advice.
> thank you
> a tired mom in Massachusetts
>