Question:

I have a 2.5-year-old preschooler with DiGeorge syndrome. He spent the first few days of his life on a respirator and when he was able to come off of the respirator and drink from a bottle, he would throw everything up. They put in a PEG due to aspirations and he was put on steroids to help with vomiting. Now, he is able to eat all textures of liquids and solids without aspirating but he refuses to put anything in his mouth (he is probably traumatized from his eating difficulties). I have been working with him for a year on having positive experiences with food and educating the parents about reducing the pressure for him to eat while still showing him positive experiences with food. He has made very little progress and recently started putting his fingers in his mouth to make himself vomit after every meal. Does anyone have any recommendations of what I can do to help this little guy?

Catherine’s Answer:

I am assuming the data about “able to eat all textures without aspirating” is from a recent swallow study? Was there any information about what they saw regarding his swallowing physiology to “round out” the impression from the VFSS? While they may not have witnessed aspiration during the study, his swallowing physiology may indeed predispose him to airway invasion. I ask because it is unlikely that the typical sequelae from a DiGeorge diagnosis have all resolved (e.g., oral-motor, craniofacial, cognitive, sensory, sensory-motor, respiratory for example). The data that they did not witness aspiration during the swallow study is likely just one piece of the puzzle. Is he followed by OT and PT? Is GI following? Go back to the drawing board and take a second look at him –his clinical presentation — separate from what you know about his “not aspirating” from the swallow study, and see what pieces stand out as problematic for GI comfort, prerequisites for PO, possibly learned behavior, and what questions you want to ponder as you consider next steps. These little people with DiGeorge are so complex, and changes will be slow, challenges with feeding are often enduring. Even with being off the vent and on RA now, he may still have some breathing/airway/coordination issues with solids and liquids that continue and are roadblocks, both related to co-morbidities and also related to learned behavior. Good that you are helping the parents pump the breaks on PO. They may view him as ready to eat and they likely don’t realize there is so much more required than just “not aspirating” during the VFSS to allow safe and successful PO, given his bigger picture.