[tri-med] Swallow Study

 Hi All :o)
I'm going to give this another shot...I tried to write to you all about this
yesterday and Florida Flicker and Flash struck yet again :o( I was almost to
the end of a long detailed post and lost the whole dang
thing...GRRRRRRRR!!!!!
Monica...I believe it was you who asked what difference laying down while
having swallow study done might make??? When Devon had his swallow study
done he was strapped into an upright feeder seat. I was right there
watching...one person spotted for him to be sure he didn't wiggle his way
out, one person worked the xray machine gizmo and the other fed him the
different consistancies of liquid and soft solids mixed with the white goop.
If the child is laying down there's a MUCH higher risk of aspirating...heck
even for a normal typical kid laying down while eating and drinking would be
at higher risk for aspiration...a kid like Devon who aspirated nearly every
swallow and every consistancy???? It would have been life threatening...very
dangerous!!!!! I can't believe anyone would suggest having that test done
while laying down??? At least a medical professional in the know should know
better...though I would not have known the risk before Devon.
Devon's pulmonologist ordered a swallow study done to try and determine a
cause or contributing factor for his asthma. The doctor, Joe and I and the
people conducting the test were all shocked to see he was aspirating every
swallow and yet had never had pnuemonia! Truly amazing! We knew Devon
coughed strongly a little while after drinking (since birth) but never knew
it was aspiration...we just thought it was because he was born with a cleft
palate and the mechanics of his mouth are different. Devon has/had an
uncoordinated  swallow and liquids tend to get away from him in his
mouth...he can't control them. The liquid would go past his swallow
mechanism and then pool back there. Then about 10-15 minutes later the
pooled liquid would start dripping down his esophogus and windpipe and he
would start choking...his coughing/choking would sound so bad that anyone
who had never heard him before thought he needed emergency assistance. It
sounds like he's going to cough up a lung...literally...even now when he
coughs it sounds like that. We learned all that from the swallow
study...seeing how it all worked was really interesting and truly amazing! I
believe that that strong cough is what kept him from getting pnuemonia....I
think that that strong cough purged whatever liquid had gone where it wasn't
supposed to???? Who knows? ALL I know is it seems to have served him well!
When the swallow study was done I asked if they would do a PH probe to look
for reflux but Devon's pulmonologist did not want to put him through the
unpleasantness of that particular test since it would not change how he
treated Devon. Even though a rather pushy speech pathologist took it upon
herself to tell us immediately following the test that we would have to
immediately cut Devon off all oral feeds (this suggestion made me cry just
at the thought...Devon LOVES eating and drinking!!! and to cut him off
seemed cruel unless we'd tried everything else!!!)...our pulmonologist
agreed with us...Devon had intensive speech/oral motor therapy (3 times per
week for almost a year) and we started using a thickener in all his liquids
making them a nectar consistancy. Devon's pulmo was also pretty ticked off
with the speech pathologist...he said she had no right to even offer an
opinion like that (not only because we didn't ask her for her opinion but
because it was not her place). He told us that WE were/are Devon's parents
and even if he himself had reccomended such a thing....we had every right to
opt not to follow his advice...it was totally up to us as Devon is OUR son
and we know best what we want to try. We knew we wanted to try everything
else before doing something as drastic as cutting off his oral feeds...I say
drastic because for him it would have been since he enjoys food and drink so
much. Did I mention how much we loved that doctor???? :o) The pushy speech
path. DID have a positive effect on me though :o) I started calling people
with children I knew had similar issues and picked their brains and I
researched as much as I could and went prepared to do battle...armed for
bear to save Devon's oral feeds...I was pleasantly surprised to find our
Pulmonologist not arguing with us ;o)
I don't know if this helps at all but that's our swallow study story. My
feeling was/is that the swallow study was one of the more helpful less nasty
tests that he's ever had :o)

Love,
Penny...devoted wife to Joe and "Mom" to Nick (11 1/2 yrs...lover of Harry
Potter, Pokemon, Fishing, Legos, Zelda, Popcorn Chicken, Pizza, cheese
sticks and chocolate icecream w/ovaltine sprinkles) and "Mommy" to Devon
(AKA-Stinky Boy, The Chief or Devonrude...Lover of Bear, Elmo and the
Muppets, Stuart Little, Barney, Blue, Pooh and Co. and food in general, 7
years old (6-15-95) !!! Full Trisomy 13 w/balanced translocation 5 and
13)...Brat and KC (the feline children), Snitch and Lil' Dude (Nick's
turtles :o)
:o) DeLand, Florida
Meet our family at http://www.trisomyonline.org/victor.htm  (Compliments of
my dear friend Karen!
And last but not least, check out the homepage I made!
http://www.geocities.com/penvic4/Penny_sPage.html
The stone that was rejected by the builders, has become the cornerstone
(Psalm 118)



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

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