[Dysphagia] Child with DGE/Brainstem problems

[dgrabo at nycap.rr.com (dgrabo@nycap.rr.com)]

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.