Beyond Picky Eating

Joseph is a 20-month-old boy who was thriving and developing well before a 4-day hospitalization for paralytic ileus at 11 months of age. Joseph is the first child born to parents who immigrated to the United States from Southeast Asia 3 years ago. Before the hospitalization, Joseph consumed 3 meals and 480 to 600 mL of milk daily. Oral feedings were restricted during the hospitalization with subsequent rejection of foods upon reintroduction of oral feeds. This resulted in 2 kg of weight loss by follow-up at 13 months. Joseph was referred to the multidisciplinary feeding and nutrition clinic at 16 months for failure to thrive, complicated by iron deficiency anemia and zinc deficiency. Joseph's feeding issues had negatively affected other aspects of his well-being; his development had stagnated, his sleep was fragmented (napping 5 times daily and frequent night waking attributed to hunger), and he had become withdrawn and irritable. By 16 months of age, Joseph was accepting only a couple of bites of solid foods by spoon or drinking small volumes (20-70 mL) of milk every 2 hours around the clock. Anthropometric z scores (World Health Organization) at 16 months: weight for age: < -3; length for age: -2.02; weight for length: -2.92; head circumference: -1.54. Physical examination revealed a cachectic and irritable child with loose skin folds. His skin was dry, and his hair was sparse. There were no perioral or perineal rashes, bruising, or features of rickets noted. Developmentally, parents reported that he was able to crawl and stand independently at the time of hospitalization, but by the time of evaluation at 16 months, he would no longer stand independently and tired quickly when crawling. He did not use any words but waved bye-bye, used gesture to indicate that he would like to be picked up, used a single-finger point to indicate his wants, and sought his parents for comfort. His fine motor skills were appropriate for chronological age. After extensive evaluation without findings of an organic cause for his failure to thrive, Joseph was diagnosed with avoidant restrictive food intake disorder (ARFID). Enteral nutrition was commenced using a nasogastric (NG) tube, and his micronutrient deficiencies were corrected. Joseph made significant gains within 2 weeks of beginning to receive enteral nutrition. Initial improvement in weight gain (25 g daily over 2 wk, resulting in weight for age z score improving to -1.85) was rapid. Joseph regained ability to stand and began taking a few independent steps. He also acquired the ability to use one word spontaneously and appropriately. His sleep improved, his previously cheerful disposition returned, and he became much easier to engage. Unfortunately, at 20 months, Joseph's parents chose to have the NG tube removed, and his growth began to falter. What would be your next steps in Joseph's care?