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Ask a Therapist: Dystonic Cerebral Palsy Extension Patterns and Jaw Weakness

Hi there,

I have just assessed an absolutely delightful little four year old boy with a diagnosis of Dystonic Cerebral Palsy. All four limbs are affected but the weakness is more apparent on the right side. My assessment has shown that he presented with significant jaw weakness and instability, he begins to jaw jut and slide after three seconds of trying a natural bite. In addition he has not sufficiently dissociated jaw, lips and tongue muscles. He has weak core muscles and very weak airflow when he speaks. Articulation is mainly open vowels with the occasional gutteral k/g and b produced with the upper teeth on the lower lip.

My main question has to do with his significant extension patterns. Whenever I presented food or a tool to the right side of his mouth it resulted in a huge neck extension round to the right with the left arm extending backwards. He needed his dad to consistently hold his head in midline. When I worked at midline e.g. frontal spoon feeding, horns and bubbles the extensor pattern to the right was still present but not as significant.

I am concerned that by working more on the right side (as I need to do because of his more significant muscle weakness on the right side) this will encourage further extensor patterns. Does anyone have experience of how to deal with this and suggestions on how to effectively work on his right side? I wondered if doing bilateral placement for bite blocks and chewy tubes would be advisable? Many thanks!

Hi and thank you for the question. In commenting, I would like to start with a question.  Is your client working with a PT and if so are they working on the rotation in his trunk?  You may want to work on airflow in rotation if you can cotreat.  One comment that many hear in my course is that “What you see in the body is what you get in the mouth” and this is particularly applicable to your comment about the upper teeth on the lower lip.

For your main question: Is your client in a well supported position when this occurs?  Also, does he have extensor patterns in his upper and lower extremities with any movement? You can also try working from behind (you are actually hip to hip with your upper arm keeping his head in neutral flexion and your fingers providing jaw/lower lip support) using a “v” finger position to support his jaw/lower lip. This will allow you to keep his head in neutral flexion vs extension. I would place a mirror in front of him so he can see himself …and you.

For your next question: You answered your own question.  I think you should go outside the box and try to present the chewy tubes bilaterally.  I would work on symmetry first and then you may be able to alternate bilateral and unilateral chewy tubes …so you can work bilaterally and then alternate sides.  Eventually you may be able to do two times right to one time left.  I might do a chew tube program before I introduced the bite block program. I hope this helps and let me know.

Lori Overland

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