[tri-med] Re: Seeking Help

----- Original Message ----- 
From: "Meierlaw"
> The issue I am writing about is Rachel's frequent gagging and throwing up.
There doesn't seem to be a pattern to it, although we think there might be
some correlation between the gagging and bowel movements because she often
has this problem within hours before or after a bowel movement.  In
addition, our pedi advises us that Rachel has large tonsils and that they
might be triggering the gag reflex if she moves her head in
a sudden or awkward position. Rachel has mild sensory issues and likes to
bang her head on the floor and this can precipitate gagging, also.

Hi Aimee and welcome,
My Alex also used to do the gagging and throwing up. He did it for years -
and while he could do it as a behaviour to get attention, most of the time
it was obviously not an attention seeking behaviour.

Eventually he got old enough that I was able to ask him why (Alex is verbal)
and he tells me that he can "feel" something in the back of his throat and
he cannot swallow it. This something is usually post nasal drip. When its
really bad he will put his hands in his mouth to try and pull it out, not so
much these days as he knows he can't but it was a definite "thing" when he
was younger.

Alex's swallow has always been dicey - unlike most children he could handle
thin liquids but could not handle anything thick or with any sort texture.
He also had a really strong gag reflex, so any sort of thick texture (eg
post nasal drip) would cause him to start gagging.

Unlike Rachel, Alex's tonsils were not large, however he had an extremely
large uvula and that didn't help the gag reflex. Because of his apneas he
had his uvula, adenoids and tonsils removed just shy of his first birthday.
This helped his apneas greatly (didn't cure them but definitely helped)
however the ENT didn't realise that Alex had a submucosal cleft and removing
his adenoids adversely effected his eating. We did not know at this stage
that Alex had T-18.

Like you I couldn't handle the continual vomiting and at 14 months his
pediatrician, an angel of a man, actually sat and watched Alex go through
this vomiting scenario. He recommended a feeding tube. During the testing
for the feeding tube they had a look at his esophagus and found a LOT of
damage had been caused by the continual vomiting and silent reflux. Silent
reflux can also contribute to the vomiting. He had what they call Barrett's
Esophagitis - pre-cancerous changes to the esophagus.

So instead of just having a g-tube he had a fundoplication as well. Because
of the amount of vomiting he did the fundo was reinforced to withstand a lot
of the pressure - we knew it wouldn't stop him actually gagging and
vomiting, we just wanted to stop him actually losing his food.

It worked and Alex has never vomited since. For about 6 to 12 months after
the fundo I would still have to go and release the g-tube to allow him to
throw up when he dry retched - but at least it was neat and tidy. Eventually
he learnt that he would not actually throw up and relax when he started
gagging on the mucous. Slowly over time he learnt to process the thick
mucous better, and I have always kept it thin with a normal saline spray. I
also use an anti-histamine daily to try and keep the amount produced down.
But even now at 9 he still gets that catarrh and tries desperately to get it
out. Post nasal drip is something that definitely bothers him.

Don't know if any of that will help you - I hope it does.

I have not lost my mind - it's backed up on disk somewhere.
-- Unknown

Keep Looking For Rainbows!!
   _--_|\
 /Karen \
 \ _.--._ /
          v Karen, Mum to Alex (8 years, T-18 Mosaic)
http://members.optushome.com.au/karens

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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