Think along with me, through this dialogue, as we peel apart the pieces of this clinical puzzle…
QUESTION: Looking for cup suggestions for a 13 month old with History of unilateral cleft lip and palate repairs completed at 4 mos. and 11 mos. of age. Currently takes in all liquids via bottle, Dr. Brown’s level 4 nipple (no one-way valve needed). Have tired honey bear, reflo, the first year, replay, Dr. Brown’s sippy spout bottle, Nuby silicone cup, munchkin transition sippy cup, Chicco transition cup, NUK hard spout sippy cup, and just an open cup.
The issue is liquid comes out too fast or with a too great of volume. Pt will cough or just spit out the liquid. We have tried regulating the amount and thicker liquids. He can swallow if liquid is regulated in that way. Any suggestions?
CATHERINE’S FOLLOW-UP: Is this an isolated cleft in a child otherwise normally developing, without co-morbidities? That helps sort out possible reasons for what you are seeing clinically and possible next steps and interventions.
THERAPIST’S RESPONSE: correct isolated cleft. Toy ally developing and hitting milestones otherwise.
CATHERINE’S FOLLOW-UP: What is his previous experience with liquids since birth? Purées? I ask because every surgeon has different restrictions pre/post op. Wondering if this is experiential, combined with decreased motor learning, maybe with some sensory preferences within the typical range — or perhaps outside the typical range??
THERAPIST’S RESPONSE: Feeding tube for 24 hours after birth. Dr. Brown’s bottle with specialty valve insert until 4 weeks ago. Puree stated at 6 months of age, started feeding therapy to resolve immature swollen pattern, anterior spillage and poor tongue lateralization. Was able to take bottles after each repair. Post-palate repair able to eat puree with no issues. Continued exposure to different textures. Can self-feed following BLW approach. Eats Cheerios/puffs lien a champ. Reducing bolus size when offered large item (like sheet of graham cracker) still developing. I’m thinking it is experiential and sensory. He uses his finger to complete lateral sweeps and pick up anterior spillage. We don’t know what nerve sensation he has in his mouth. He is still cutting teeth. PCP wants him transitioning off bottles soon. Just can’t seem to find a cup that has a reduced enough flow to even give him experience with drinking out of something other than a bottle.
CATHERINE’S FOLLOW-UP: It’s uncommon that with an isolated cleft one would see anterior spillage and poor tongue lateralization, the need for caregiver to break graham cracker sheet into smaller pieces, and the need for finger for lateral sweeps still —-especially with such opportunities as you describe, and BLW along the way. Those differences, combined with no success with multiple utensil trials makes me wonder if there are some differences in lingual integrity that underpins tongue-palate seal, lingual thinning and cupping, decreased intrinsic lingual muscle ROM for lateral shifting…wonder if perhaps a tongue tie? My colleague Laura Brooks from Children’s Healthcare of Atlanta published an article that suggests a potential correlation between altered swallowing physiology and restricted BOT secondary to posterior tongue tie. I wonder if that is relevant to this clinical presentation. It may not be.
Brooks, L., Landry, A., Deshpande, A., Marchica, C., Cooley, A., & Raol, N. (2020). Posterior tongue tie, base of tongue movement, and pharyngeal dysphagia: what is the connection?. Dysphagia, 35(1), 129-132.
Can you tell me more about those oral-sensory-motor components —- I wonder if we figure out the “why” and then focus on a cup that averts the resulting coughing or anterior spillage You’ve tried so many cups , wisely so, and the child also has trouble with chewing except with essentially meltable items… I don’t think it’s the cup– it’s what the child brings to the task, or what he might not yet have learned…. Something is missing in this puzzle. Sounds like the nature of his challenges point away from just “experience”, and perhaps both sensory and motor pieces. It’s not typical to experience loss of nerve function related to cleft repair. Thanks for all the detail as we think this through, and for your clinical wisdom, not typical of an “isolated cleft”. Sorry for so many questions but my they help me sort it all out.
CATHERINE’S FOLLOW-UP COMMENTS… Not sure about the outcome for this child as there wasn’t further conversation, but the key take away…It typically isn’t about the utensil but the bigger picture. Peeling apart the multiple pieces, slowly and methodically, is the way we arrive at “the why” and what the next steps might be for each unique infant or child with whom we are blessed to work.