Question:
I’ve been seeing a 15-month old female pt. for feeding therapy for almost one year (coming up on annual). She’s diagnosed with microcephaly & pharyngeal dysphagia. She came to me on a 5.0 oz. honey thick soy formula diet after a swallow study revealed aspiration.
She’s always sick (snotty, congested, had CDIFF 2x) and presents with a snorty quality when eating. ENT reports clear, but narrow canals. She’s been cleared by GI, passed thyroid testing, had genetic testing revealing no abnormalities, and PCP not too concerned for her development. Therapy tools & techniques have included facial and oral massage, flavored gloves, Z vibe, Nuk brush, flat maroon spoons, chewy tubes for chewing, trialing different temperatures & flavors, etc. She clears spoon adequately, doesn’t lose food, sits upright in a high chair, and gains weight appropriately.
She’s transitioned from thickened milk–to thickened stage 1 & 2 foods–to non-thickened stage 1 & 2 foods (cleared by Dr and follow up swallow study revealed aspiration on liquids only). And we are stuck here. There were two instances when mom forgot to pack food so she was given stage 3 lasagna bc ironically, that’s all I had at the clinic. She tolerated the chunks and ate the food w/ no problem. She never did this at home for mom or ever again for me. One time, in preparation for her 1st birthday, we tried sneaking tiny pieces of cupcakes in her food. She tolerated this and even ate bites of it without baby food altogether by the end of the session! She never did eat it again. Lately she’s taking 1-2 containers of 4.0 oz. stage 2 baby food during her sessions lasting 30-60 minutes. Once a solid (tiny cereal piece, yogurt meltable, chunks in stage 3 food) of any kind enters her mouth, she’s choking, crying, and trying to get it out. She’s not into the oral motor stuff anymore. She turns her head away, she just wants to eat. Help! Where should I go next with my re-eval as far as testing, other referrals (allergy?) and new goals?
Answer:
Sounds like a complex child. Her microcephaly is likely a clear influence on her skill progression and at least part of the reason for her feeding/swallowing difficulties. As Heidi suggested, her sensory-motor system is likely not going to process information in the typical way, and that may be the underlying reason for her variability in skills and her dysphagia. From the information so far, I don’t know anything about her early history which often helps to sort out what might be going on and why. It helps to now she aspirated but that is so limiting in helping us understand the bigger picture. Sometimes swallow study reports unfortunately only tell us aspiration occurred. If we could understand why the events occurred, what the child’s response was, and what specifically then might improve physiology, it allows our therapy approach to be more directed.
The always getting sick and congestion may sequelae of dysphagia and/or reflux. If there is a delay in swallow initiation, some of the bolus may be inadvertently mis-directed in to the nasopharynx and create the sound you hear. She may have more chronic congestion because refluxed material is entering the hypopharynx, some of it is being swallowed down but some “hangs up” along the
pharyngeal or nasopharyngeal wall.
Sounds like you have utilized many of the typical therapy tools to enhance function and she’s made progress. Her inconsistent ability to manage texture change may indeed be sensory-motor and/or trouble preparing and managing (i.e., fully chewing, reforming a bolus and effectively swallowing the bolus. Again, not knowing the etiology for and timing of for the current liquid aspiration reported, that remains a missing piece of our problem-solving puzzle that might help us better understand her challenges with her solid diet as well. Sometimes children with microcephaly may have diminished sensory registration throughout the entire oral-pharyngeal system that can at any moment alter processing of information along the swallow pathway. This places her at risk of mis-interpreting sensory data as she east/drinks, so she will bear watchful, vigilance during meals to monitor rate of eating and bolus size. The food chaining Heidi referenced might indeed be helpful and you can incorporate continued work on further improving oral-motor integrity as you go along. Given her microcephaly, the quality of her oral-motor skills may be a continued issue, although they may be functional. The clarity and variety of her spontaneous speech/sounds and her imitative skills may provide some indirect insights for you.
Perhaps you can talk with the therapist who did the study to find out more about physiology and have her suggest next steps, since she has seen the child clinically. I would also find out more about the reported liquid aspiration, so you know what you can be working on to enhance her liquid swallows, with the goal of eventually not needing thickening as safety permits. While we may need to thicken liquids for some children when there are no alternatives, our goal as you know id to work on the underlying components of the swallow that will support safe tolerance of less thickened and hopefully eventually unthickened liquids. Also is she in OT and PT? She may benefit from sensory integration and sensory motor treatment that may actually further support your progress with her.
I hope this is helpful. You are asking such good questions and she is making progress. Keep up the good work!