A Fresh View of Treatment Planning for the Significantly Involved Neuromuscular Child

Posted on December 15th, 2012 by Denise | No Comments

A Fresh View of Treatment Planning for the

Significantly Involved Neuromuscular Child


Denise Koonce OTR


I once had the privilege of working with a little boy who taught me a great deal.  It was fairly early on in my career as an OT and as I would learn, there would be many children over the years who would teach me great numbers of things.  He was about 3 years old when I met him and his name was John.  John had been born several weeks premature, was the surviving twin and had experienced a very lengthy hospital stay.  His past medical history included bilateral Grade III bleeds and a left Grade IV bleed, ROP, NPO, enteral drip feeds, extended ventilator support with extubation, a high arched palate, and significant developmental delays.  He had low tone overall, minimal active movement and was experiencing muscle shortening in his movement muscles as he used them for postural control.  He also exhibited the same tone and muscle changes in his face as he had the classic sagging cheeks, downward facial appearance, open mouth, minimal nose bridge in his nose, and tight shiny skin around his nose with no facial expressions.   One of the goals his mother hoped John would achieve was to become a safe oral feeder.  We worked for several weeks on the muscles of his face to improve oral motor control in preparation for feeding with very slow progress.  However, John surprised us both by accomplishing a different functional task first.  What he did was monumental and very special!  It occurred during a therapy session after completing his oral motor activities and his mother had done something causing his mother and me to laugh.  I had turned away from John to look at his mom while continuing to laugh with her but she was still facing her son.  While I was watching his mom, I became aware that her face suddenly went from happy to crying and I was alarmed at the quick emotional change.  I immediately asked her “What’s wrong?” and she stated through her tears “He just smiled!  That’s the first time he has ever smiled.”  I then quickly turned to see for myself the wonderful expression on John’s face.  For John, the ability to smile was an enormous accomplishment.  Even though John’s new ability to smile was not written as a goal it certainly could have been a goal.  Smiling would have been an appropriate goal because it is one of the most basic forms of communication and a smile can communicate a lot to another human being, especially a mother or caregiver.  A smile denotes pleasure, acceptance, amusement and love.  John’s act of smiling also showed his first appropriate reaction to a cause and effect situation giving us more insight into his cognitive abilities. I learned then, just how incremental we have to be in treatment planning, with this population, in order to help improve their quality of life.  We have all had similar patients who are significantly involved and their progress tremendously slow. However, what we have to remember is, each child is different, they all progress at different speeds and what is significant progress for one might not be significant progress for another.  We also have to decide whether or not it is appropriate to admit them for services and then decide when it was appropriate to discontinue therapy services.  So many aspects go into this decision that it can become difficult and heart wrenching.  For this reason I have listed some areas to consider and questions to ask your self while making those decisions. 

Here are some areas of function that we sometimes overlook but are vital and should be considered with this population in regards to our focus during therapy.  Function in this population can be the quality of breathing and/or the ability to diaphragmatically breathe, rib cage formation and mobility, timely safe swallowing, tolerance to oral care, small active movements which can lead to their ability to change body position and weight shifts, basic forms of expression and communication, as well as visual response and coordination.     

Questions you can ask your self –

What is important or significant to this patient in regards to function?

What is significant for them in regards to progress?  

What can they do and how can you build on it for function?

What is motivating to the child?

What creates a reaction in a cause and effect situation?

What is important for them in order for the caregiver to take care of them?

In this population those who have the potential to make progress will, even though it may be extremely slow.  It is our responsibility to figure out the best way for them to reach their maximum potential and then assist them in obtaining it.  It is necessary to create attainable functional goals for them which will require us to become microscopic in our treatment planning.  Think incrementally and become very detailed in your goal writing.  The next time you encounter a significantly involved neuromuscular child consider the above information as a fresh way of viewing their treatment plan or use this to review existing patients you may currently be treating.  Please share with us your beautiful moments of success with this patient population and examples of your creative treatment planning.

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