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Subject:
From:
Charles Darr <[log in to unmask]>
Reply To:
St. John's University Cerebral Palsy List
Date:
Sat, 9 Oct 1999 05:26:26 -0400
Content-Type:
text/plain
Parts/Attachments:
text/plain (55 lines)
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


OHHH been there and done that!!!. Alex had the Nissan, gtube and plyrtomoy
done at 18 mo ( he's now 4.5 yrs) for reflux and ftt ( He was still in the
16 # range when *they* decided he finally wasn't growing...DUH). He also had
an uncoordinated swallow which was the second reason for the gtube, to
prevent aspiration.Poor Alex had the double whammy of aspirating food going
down as well as when it came back up.  His lungs were a mess!.  He also
gagged and wretched with each feeding and we also ended up on very slow
overnight feeds.  Alex has delayed gastric emptying which was one reason the
Nissan was NOT a good idea.  The food wasn't going out fast enough for more
to come in.  The fundo essentially created an outlet obstruction and the
food just sat and fermented.  Motility drugs weren't much help, laxatives
were a nightmare. Milk of Magnesia was his life saver.
I would like to correct the  idea that the fundo prevents vomiting and cures
reflux.  It makes it very very difficult to vomit, but if the force is great
enough the person will vomit, which is why it can become an ER situation.  A
fundo simply prevents the reflux acid from reaching the esophagus were it
can cause major damage. Alex with the gagging, retching and yes vomiting
caused his fundo to loosen within the year.  What they also don't tell you
is that the Gtube itself, causes an increase in reflux.  If your kid does
eat orally ( Alex had N0 oral aversions until we did the gtube and fundo and
then he refused all oral feeds for close to 2 years) try just the fundo.
Check for delayed gastric emptying before the fundo though.  Once the fundo
loosened Alex once again began to eat ( we too were told it would be a
maximum of 6 months for the Gtube)  He has been Gtube free since April this
year.  He eats small amounts of just about anything, constantly rather than
3 meals a day.  We paid attention to how Alex ate comfortably instead of how
the "experts" said he should be fed.  The answer most surgeon have to any
problems after they do the surgery is the surgery is perfect ( technically
they usually are right) so any problem must be psychological...to the point
they sent Alex for an psychological work over at 22 Mo. of age ( he was just
learning to talk..what did they expect him to tell them?) To the surgeons
surprise the results showed a well adjusted, happy and interactive child who
had formed good attachment and proper bonding with mom.  Mom was not the
cause of the problem.  And yes the gtube list is the biggest reason I
learned to advocate strongly for Alex as I saw others being given the same
excuses from the surgeons.  Check it out and ask your questions there in
order to make a well informed decision.
Joanne
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