[Dysphagia] chylothorax

[pressmah at sjhmc.org (pressmah@sjhmc.org)]

Amy you certainly have a brave little niece who is pushing along.  Yes, she
must be medically stable before you can consider PO feeding.  This may be a
long term goal.  If it is, we often change to a gastrostomy tube.  The NG
tube is uncomfortable and increases oral aversion.  It sounds like her
therapist is working on providing some positive oral experiences.  Her
parents should help with this by bringing a variety of toys to her mouth so
that she can experience many different textures and positive oral
experiences.  It is important to watch her closely and to withdraw the item
if she shows any signs of discomfort.  Suzanne Evans Morris has worked
extensively in this area for many years. You can go to her website at
NewVisions.com for many ideas and can buy her books there.  Good luck to
this little girl and her family.  Hilda Pressman MA, CCC SLP BRS-S

-----Original Message-----
From: amy beyer [mailto:amy_beyer@yahoo.com]
Sent: Tuesday, July 05, 2005 9:29 PM
To: dysphagia@b9.com; jill georges; pat bates; amy_beyer@yahoo.com;
rebecca moffatt
Subject: [Dysphagia] chylothorax


hi there. i have only worked with geriatrics, not peds and certainly not in
the nicu. my niecewas born in late jan and is five months old. she is still
in the nicu (hasnt come home yet). she has chylothorax and a leak in her
thoracic duct. her thoracic duct  remains unpaired after four attempts at
surgery.her doctor is hoping for a self-correction. she was on a vent for
two months but has been off of it since april. . she has a tpn and an ng
tube but is only being fed 17cc of formula (every hour) (pregestimil)at this
point. (40cc = 1 oz for comparison). this is done through continuous feed
(ng tube), as her lymphatic system cannot tolerate bolus feeds at this
point. they are hoping to increase her formula more (raise 1 cc each day,
given she tolerates it well) but each time they have done this in the past,
her body cannot tolerate the extra fluid and she regresses (this is the most
she has been on in the past month or so). she has significant oral aversion
and a strong gag r!
 eflex to
 any oral stim. she has not had continuous slp, pt or ot services until now
b/c she has been on such a rollercoaster with feeds (being able to tolerate,
etc) and had chest tubes in and out for so long. each time the chest tubes
have been in (to drain excess fluid), her doc dc's services. in the past few
weeks, she has had more therapy (st and pt at least 3x a week). speech is
working with oral aversion (using lollipops, flavored lipgloss etc). does
anyone have any experience with a case like this and do you know prognosis
re: po, reducing oral aversion, connection to speech development, etc? a
doctor who is not their regular doctor said some babies NEVER eat (po) and
her (main doctor has NOT said that at all. i think she will need more
therapy (speech and other) as she starts to tolerate feeds, etc and that she
will benefit tremendously from it. the main goal is to get her with po feeds
that she can tolerate without having regression she has in the past. having
tpn in long t!
 erm is a
 risk to liver, i believe. so they want to get her off that as soon as she
can. anyone have any insight or know where i can fid some other resources to
help? also, are there any parent dysphagia boards for pediatrics i can
direct her to? thanks so much. any tips, insight, advice, etc would be most
appreciated. 



Amy M. Beyer 
www.thebeyers.com
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