QUESTION:
I am a young clinician with a patient that has recently had a follow up swallow study that showed poorer results than original swallow study in absence of change in medical status.

Patient is male, 10 with CP. I’ve seen him for feeding and social/emotional communication around mealtimes due to intense frustration. Recently he got a swallow study that shows aspiration for thin and half nectar by straw and sippy cup due to volume. Nectar showed no a/p. Silent aspiration on 5/20 swallows. He eats all solids and had no a/p on previous and most recent MBSS.

Recommendation following swallow study was to use Thick It to nectar consistency. Also to use Vital Stim.

I’m looking for input on next steps in the home health setting. Is it worth it to discuss Frazier Free Water protocol with Mom? One consideration is he had a croup attack 2 months ago unexpectedly.

ANSWER: 

So glad you reached out. Lots of thoughts and questions as I read your post. Know that the questions and “thinking out loud’ are part of my clinical problem-solving, to sort out relevant considerations and complete differential as I go along. Just lots of questions and weighing of possibilities to start with. Usually, children with complex co-morbidities have multiple relevant components to their care to sort out.

“Poorer results than the original study” in this child’s situation, based on what we you have shared, could be the result of several possibilities.

Not sure how long ago the previous study was or the results, but the previous study may be part of the relevant picture: the analysis of that study might not have incorporated all the data or a bigger picture so the “results’ were precarious; the study was short or data was tenuous and conclusions were therefore tenuous; the etiology for the whatever adverse events were seen was not clear (or not made clear in the report) and perhaps, if it were,  would have given more information that might make sense now with newer data; physiology was not described, which would have provided more data than just what events of aspiration or laryngeal penetration were witnessed – remember Bonnie Martin Harris has told us that “aspiration or penetration is neither sufficient or necessary for a swallowing impairment”, so physiology becomes the key in our analysis; the study is always a moment in time and so we may not witness events that are indeed occurring during true meals.

A second relevant factor to consider is his neuromotor problems with a diagnosis of CP. While CP is not progressive, increasingly complex functional skills (including feeding) can sometimes look worse and become more challenging as time goes on, due to the demands on an already altered sensory-motor system to integrate for increasingly complex tasks over time.

A third relevant factor to consider as you reflect, is that children with CP often have related co-morbidities. We don’t know what his are from your description, but they can often include respiratory and GI, whose integrity may wax and wane, and therefore be fluid in their influence, pending for example the season of the year (e.g., winter can bring more respiratory challenges, spring can bring allergy-like factors in to play) , growth spurts, minimal changes in diet content that may seem at first glance as minimal, changes in activity. This can lead to subtle respiratory changes, subtle GI changes,  that in a dynamic system like the swallow, can influence function from moment to moment. The croup, which may have been part of an URI provoked by airway invasion from above or below, is worrisome.

Can you connect with the SLP who did the study and perhaps look at it together? It might suggest some added interventions that were or were not objectified, though likely were, such as: rate of intake, bolus size, cup utilized (there are so many and some work better for some children for safety), pacing, self-drinking versus fluids offered by caregivers, position and support/stability offered to optimize proximal and distal stability (seating device and support for the procedure can alter physiology in a good way or an adverse way).

Regarding a free water protocol, is he staying hydrated with the thickened liquids? Is he willing to drink them? Has his fluid intake gone down since thickening was started? Does he receive good oral care on a regular basis? What has his pulmonary health been like over time? can family carry it  over safely? Doesn’t sound indicated with what we know.

I hope this was helpful to get you thinking. It’s ok to live in the gray zone and not know these answers. Just thinking about them is part of the problem-solving process.