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[Dysphagia] chylothorax



"NewVisions.com" came up with another site, so I searched some and 
found this instead:  http://www.new-vis.com/

Jill Zweier


On Jul 8, 2005, at 11:44 AM, pressmah@sjhmc.org wrote:

> 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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