I recently started treating a 2-year-old little girl with Rubinstein-Taybi syndrome in outpatient feeding therapy. She has had a G-tube since she was 1 month old and has barely eaten PO. I am just trying to get her to take PO to get her to a VFSS, as the last VFSS she had, she aspirated after the swallow due to residuals in pyriforms. No cough response at the time. She is literally so averse to even a dry spoon touching her lips, she tightens her lips and turns her head no matter how many times I do it in an attempt to desensitize her. The one time I touched a dipped spoon to her lips, she had a moderate-severe gag response. And the amount of vanilla pudding in the bowl of the spoon was so minimal, I couldn’t really lessen it….we just went back to a dry spoon. I’ve tried the Honey Bear straw, I’ve tried a spoon with cold water, Dum Dum lollipops….no luck. I’m really at a loss. We’ve had 4 sessions so far and no progress…and even possibly a regression, as she now won’t even sit in the high chair for more than 10 minutes without getting restless, reaching out, wanting to play and/or sit on parents laps. She has no verbal communication, only whining and reaching arms out. She can identify some things but it’s inconsistent. However, I know her receptive language and memory are her strengths. Any suggestions/feedback/advice is greatly appreciated! I need all the help I can get with this little one.
Normalizing her sensory-motor/postural system (through partnering with a sensory integration trained OT) and normalizing her oral-sensory system will be a critical first step. PO feeding skills are built on a well integrated sensory system, often a key area of need for children with this diagnosis.
A swallow study likely isn’t a next step for her until she is accepting well graded positive oral sensory input. There is likely some level of swallowing impairment that won’t be fully understood until the sensory system is normalized, which will allow her to then begin to accept trace tastes of purée to eventually support an instrumental assessment of swallowing physiology.
Her progress will be slow due to her underlying diagnosis and a sensory system that has been impaired since birth. These systems are complex, require heavy neuro underpinning and require new sensory- motor maps be created in the brain through child-guided well graded sensory motor learning. Co therapy with an OT focused on sensory treatment with SI intervention would be a great facilitator. Parents can learn along with you about the need to think of small steps “toward” eventual PO but that is not the immediate goal due to the many little steps of learning required before she is truly ready to eat/drink orally.