[Dysphagia] Child with DGE/Brainstem problems

[eripley at yahoo.com (Irene Campbell-Taylor)]

Diane
HAs this child ever had any genetic studies? Sounds
like one of the many cerebellar related congenital
syndromes which would be important to know re
prognosis. I would suggest that a 30 month old who
says - if it's an exact quote- "I can't swallow" is
not cognitively but may very well be behaviorally
impaired. 
Irene.
--- dgrabo@nycap.rr.com wrote:

> 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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=====
Dr I Campbell-Taylor
Clinical Neuroscientist
Exclusive Distributor:
www.interactivetherapy.com