Changing Colors: The Blog of Spectrum Pediatrics

April 25, 2017

Feeding Friday: Tube-Free Superstar Carlin

Carlin was born with a syndrome called CHARGE syndrome.  Kids with CHARGE can have a number of difficulties, including vision, hearing and heart problems.  Carlin also aspirated food and drink into his lungs making it unsafe for him to drink, so he got a feeding tube at 5 weeks old.  When he was 6 months old he could begin to take baby food purees safely, and at a year, he was finally able to drink liquids without it going into his lungs.  Unfortunately, all of the medical procedures and the inability to practice eating safely and positively had resulted in a feeding aversion.  In Carlin’s view, food was scary and frightening.  He would eat some bites of yogurt if he was distracted, but he didn’t like to drink, and his mother had to work very hard to get him to take anything at all.  His parents did everything the doctors and therapists suggested, but he made little progress in his intake.

Carlin’s family contacted Spectrum, and treatment started in the Virginia location when he was 18 months old.  On the first day of treatment, the focus was on offering food without forcing or bribing.  Once Carlin was able to initiate tastes himself, he actually swallowed a little bit more than when he was being rewarded or bribed.  By day 4, he was asking for milk and drinking up to 4 oz of at a time.  At first, most or all of the solid foods he tasted came back out of his mouth, but slowly more of each bite stayed in.  By day 6, he was using his fingers to help keep the food in his mouth and his skills got better, but he still often needed to have his shirt changed after a meal.  By day 7, he was taking enough so that he could discontinue tube use.  He sat up straighter at the table, and began putting two words together more consistently in his speech.  In the next week, his skills continued to improve.  He was willing to try most solids, and all of the foods were now staying in his mouth.   His mother commented that in a restaurant they could order him something from the menu, and didn’t need to worry about all of the food falling out of his mouth and making a mess all over the floor.

Carlin was able to have the tube taken out 10.5 weeks after the 10 day intensive treatment.  He loves to eat and will eat almost anything now.  Carlin is definitely a tube-free Superstar!

 

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