[Dysphagia] Child with DGE/Brainstem problems

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

I would suggest that this child be seen by a team of experts such as those
available at the Center for Pediatric Feeding and Swallowing at St. Joseph's
University Medical Center Paterson, NJ www.feedingcenter.org.  or another
team elsewhere in the country

-----Original Message-----
From: dgrabo@nycap.rr.com [mailto:dgrabo@nycap.rr.com]
Sent: Wednesday, October 06, 2004 1:28 PM
To: dysphagia@b9.com
Subject: [Dysphagia] Child with DGE/Brainstem problems


Dear Listserv,

    I received this question from a colleague who then asked me to post it.
My response was that 1.  Vital Stim will not help - child can swallow
liquids and pureeds just fine.  2.  Etiology of the brain stem/cerebellar
problems needs to be found (Idiopathic cerebellar ataxia?).  3.  The DGE
(delayed gastric emptying) definitely needs to be resolved and that GI
follow-up is imperative.  For now, I would suggest nutritionally dense
pureed foods fed in small amounts throughout the day. Any other
suggestions/comments are most welcome.  

Long Post:  
Thank you for your response to my call. The child I am wondering about is 30
months with no diagnosis. I have been servicing her for over a year and most
of our treatment has focused on oral aversion/sensitivity issues.  At this
time she accepts Stage two and can effectively pocket out any lumps in a
Stage 3.  She has me completely baffled.
 
More details: low tone, mild dysarthria, mild hypernasality, wide based
gait, GERD (treated with Zantac and periactin), DGE (untreated - parents
took her off e-mycin since there was no overt change in her eating
behaviors), no hx of tube feeding although she should've been receiving NG
feeds from the start. Mom and dad won't go with it in spite of the fact that
the child weighs 18 lbs. and has never been on a curve. Daily vomiting,
gagging, normal swallow study with liquids as an infant, parents have
declined my suggestions for another. They belive that the child regresses
every time she undergoes a medical procedure.
 
This child used to accept solids, bite with centrals and propel to molars
with adequate bolus prep. I don't know what happened. About 6-7 months ago
she just started to regress accepting, as I said, only purees.
Unfortunately, the pediatrician and GI have not made a big deal out of this
and I feel as though I'm out on a limb trying to get someone to look at this
kid.
 
Anyway, last week was another epiphany.  Following our daily oral stim
(vibration, t-brush, ARK), I presented finely ground, overcooked vegetables
from the babysitter's stew. This was no lumpier than a Stage 2.  She
pocketed it, wouldn't swallow but clearly loved the flavor.  No gagging, no
aversion. After several minutes of chewing, pocketing with no swallow, I had
her spit it out. I asked her why she didn't "eat it" and she said, "I can't
swallow."
 
This child can clear her own pocketed food with her tongue, can identify
when she is pocketing, can drink several ounces of water while she pockets.
No documented aspiration, no coughing during liquids or even Stage 2.  There
is an extended oral phase that I think is probably contributing to her
difficulty swallowing--but it is at this point that my expertise fails me.
I'm well versed in oral sensory/behavioral feeding problems, but I have to
admit that the relationship that exists between the oral phase and the
trigger for her swallow is where I'm not so sure. I thought that perhaps the
pharyngeal stage of the swallow could be initiated through v-stim even if
there is a delay in the oral phase.  I know that she would need another
swallow study before any of this could be pursued, but I thought I'd talk to
you first.
 


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