[DYSPHAGIA] Fwd: Danny's Swallowing therapy

[Pluto111@aol.com (Pluto111@aol.com)]

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From: Pluto111@aol.com
Return-path: <Pluto111@aol.com>
To: cpparent@maelstrom.stjohns.edu, gtube@gospel.iinet.net.au, MAX18117@aol.com,
	MMorris236@aol.com, okbabes@onelist.com, WindsorS@exmur.nia.nih.gov
Subject: Danny's Swallowing therapy
Date: Sun, 17 Jan 1999 21:34:49 EST
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Here is how the treatment at the Swallowing center in Cleveland works.  They
use electrical stimulation therapy on your throat, for Danny's little face
they basically put 2-4 electrodes under his chin.  Along w/ this therapy he
has a chrico pharyengeal dilatation, actually he had two, these usually do any
where from one to four.  The chrico pharynx muscle is located at the opening
of the esphogus.  They believe it can be very tight when some one is not
orally eating or for other reasons and this does not allow the food to pass
through causing the aspiration.  This could actually be seen on his previous 2
swallow studies.  Danny was put under and the dialate this muscle, stretching
it open.  He also received the e-stim everyday.  After one dilatation and 3
stim treatments his swallow study showed significant improvement.  After 2
dilatations and 9 stim treatments his swallow study was great!! Though he came
down w/ cold the second week and of course this kicked off a bad bout of
reflux.  So we actually put off the third dilatation and then after the great
second swallow study we canceled the third all together.  If he needs to be
dilated again, they should be able to do it here at JohnsHopkins.  The stim
treatments are only done in Cleveland right now, as they are working on FDA
approval for it, Danny is part of that study.  It was a great experience we
met alot of wonderful people.  There was a wide range of patients having the
treatment, Danny was the youngest while there and the oldest was a Nun who was
there on her 100 th birthday!!  We also meant Howard Marr from the G-tube
list, what a great guy!! His wife and daughter were w/ him and they were all
so nice!! Howard was doing well w/ the treatments also and had passed his
swallow study after a week there also!!!  I highly recomend any one interested
in it to check it out.  It is mostly non invasive except the dilations, which
the adults say are not bad at all.  

Danny is now able to eat pretty much what ever he would like and as much as we
can get in him.  I have been trying to cut tube feeds aliitle, but he's in one
of those bad reflux cycles so even pedialite is hard to keep down now.  But he
is drinking from a bottle which is great to see, as he has not done that since
4 mos old, also working on the cup.  He will eat a whole jar of stage one
fruit no problem!  I will have to start counting calories now.  He has not
gained weight really since his first birthday, so it will be hard to cut tube
feeds, but I guess I'll need to if I want him to be hungry enough to eat.  Any
questions, feel free to email me.

Kathy mommy to Danny and Crew

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