Progress! Not a word that had been at the forefront of my therapy sessions with Sarah. But since my trip to the New Visions Clinic in Virginia, progress was our word of choice. In four weeks, Sarah went from automatic meltdown during tube feedings to an active participant. She was requesting breaks during gravity bolus feedings and allowing for gentle abdominal massage and venting of gas through her g-tube before, during, and after feeds. However, she was still showing many signs of stress and discomfort. As formula flowed into her belly, she would breathe more heavily, close her eyes, and rub her ears. Her parents and I all felt that something was still not right.
Sarah’s parents were reluctant to add another doctor or medical group to their already complicated team of professionals. They consulted with the physicians from their inpatient behavioral feeding program. The program suggested that Sarah had “dumping syndrome”, a scenario in which the body rapidly expels food or liquid through the digestive system due to a damaged GI system. Dumping syndrome is common in children who have had Nissen fundoplications, as Sarah had along with her g-tube placement. The symptoms didn’t add up though, and Sarah’s parents felt uncomfortable with such a serious diagnosis made over a phone conversation. Sarah’s pediatrician was also out of ideas and further recommended to the family to another feeding team lead by a GI doctor.
This new feeding team suggested the placement of a g/j-tube (combination gastronomy tube and jejunostomy tube), which would allow for Sarah’s formula to be dripped slowly into the jejunum, the second part of the small intestine, just past the lower sphincter of the stomach.
Sarah’s parents were reluctant to add another doctor or medical group to their already complicated team of professionals. They consulted with the physicians from their inpatient behavioral feeding program. The program suggested that Sarah had “dumping syndrome”, a scenario in which the body rapidly expels food or liquid through the digestive system due to a damaged GI system. Dumping syndrome is common in children who have had Nissen fundoplications, as Sarah had along with her g-tube placement. The symptoms didn’t add up though, and Sarah’s parents felt uncomfortable with such a serious diagnosis made over a phone conversation. Sarah’s pediatrician was also out of ideas and further recommended to the family to another feeding team lead by a GI doctor.
This new feeding team suggested the placement of a g/j-tube (combination gastronomy tube and jejunostomy tube), which would allow for Sarah’s formula to be dripped slowly into the jejunum, the second part of the small intestine, just past the lower sphincter of the stomach.
No surgery would be necessary to change the g-tube to a g/j-tube, but it would need to be changed under anesthesia and with some radiation to ensure proper placement. The new team felt that Sarah’s discomfort was the result of overstimulated sensory receptors in the stomach, probably in conjunction with food intolerances or allergies. The idea was to give Sarah’s stomach, as well as her emotional system, a nice long break from food. Once Sarah’s system was given time to re-regulate itself, the team thought that therapy directed at the feeding aversions would be successful.
Sarah’s parents were initially afraid of another “medical” procedure. Especially when they had been told that the placement of the g-tube would solve many of their problems and in turn caused many more than they could have imagined. They were also concerned about what a j-tube would mean for their daughter. A j-tube meant that Sarah’s feedings would need to run for most of the day. She would have to wear the small feeding pump in a backpack during the day. Would she still be able to participate in dance class? What about playing outside with other kids at their neighborhood park? What about swimming in the lake during the summer? Fortunately, the new GI doctor walked through the entire process with both parents. Sarah would be able to participate in most activities with only a few modifications. For certain activities, the feeding could be stopped for a few hours to allow her a little more freedom. Eventually, they would try to run the feedings overnight, so that Sarah would have even more time “off the pump” during the day.
Sarah’s parents were initially afraid of another “medical” procedure. Especially when they had been told that the placement of the g-tube would solve many of their problems and in turn caused many more than they could have imagined. They were also concerned about what a j-tube would mean for their daughter. A j-tube meant that Sarah’s feedings would need to run for most of the day. She would have to wear the small feeding pump in a backpack during the day. Would she still be able to participate in dance class? What about playing outside with other kids at their neighborhood park? What about swimming in the lake during the summer? Fortunately, the new GI doctor walked through the entire process with both parents. Sarah would be able to participate in most activities with only a few modifications. For certain activities, the feeding could be stopped for a few hours to allow her a little more freedom. Eventually, they would try to run the feedings overnight, so that Sarah would have even more time “off the pump” during the day.
Feeding pump carried inside a backpack
Sarah received her g/j-tube a little more than a week after her first evaluation by the new feeding team. Being fragile, it took a very long time for her body to heal after the new placement. Her family struggled with leakage around the g/j-tube site, infections, and with the new process of carrying around a feeding pump everywhere they went. After a few weeks, things had finally settled down and Sarah was back to herself, and even a little bit better than she had been before. Overall, the transition to the g/j-tube was a success. Sarah no longer retched or arched during tube feedings. She appeared comfortable almost all of the time. The one exception was during activities that were particularly stressful. Sarah still demonstrated retching and gagging in response to anxiety, even if it was unrelated to food. She even began to explore foods independently during family mealtimes. She no longer appeared “afraid” of food, even though she was not yet eating by mouth.
Lesson #6: Sometimes one finish line is the start of another journey.
Even though Sarah is now tolerating her tube feedings, gaining weight, growing, and happy; the real work is about to begin. This is the beginning of the true feeding therapy. Now that Sarah’s medical needs are met and she is comfortable, we will begin to explore ways to help her eat comfortably by mouth.
Lesson #6: Sometimes one finish line is the start of another journey.
Even though Sarah is now tolerating her tube feedings, gaining weight, growing, and happy; the real work is about to begin. This is the beginning of the true feeding therapy. Now that Sarah’s medical needs are met and she is comfortable, we will begin to explore ways to help her eat comfortably by mouth.
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