Author: Sharon Wallace, RD, CSP, CNSD, LDN
Melissa was a 2 year-old little girl with Down Syndrome. She had several surgeries in the first year of life to correct heart defects associated with her condition, and was frequently in and out of the hospital. She would often need to receive her nutrition from a nasogastric tube (also called an NG tube-a small tube which enters the stomach through the nose through which nutrition formula can be given). As a result, she became very defensive about having food or drinks near her mouth and was eating very poorly, which negatively affected her growth. A decision was made at 1 ? years of age to place a gastrostomy tube (G-Tube-a tube that is surgically placed directly in the stomach to provide nutrition), and this is what provided all of Melissa?s nutrition. Due to her father?s job transfer, the family moved four hours away from the medical center to a very rural part of North Carolina shortly after the tube was placed. There was limited availability of follow-up medical services in their area, and transportation was a problem for the family.
The home health company who provided Melissa?s formula and supplies contacted a pediatric nutritionist, out of concern for many issues that had come up regarding her feeding regimen. There was a long waiting list to see the nutritionist at the local health department, so the company contacted the nutritionist who originally worked with the family when the G-tube was placed, and a consult was set up through the NC Early Intervention Videoconferencing Network and the medical center. When the nutritionist talked with her mother, she was told about the following nutrition problems..
1. Melissa was still receiving most of her tube feeding by ?continuous feeds? on a pump and it was hard to push the pump around during the day while she was crawling. Plus, her younger brother often knocked over the pump. She received two ?bolus? feeds (a larger amount in a shorter period of time), but was scheduled to receive them over 30-45 minutes and mom complained that her arm became tired and it was difficult to ?keep up? with the other children while she was giving Melissa these feedings.
2. The feeding tubing often became ?kinked? during the night and would beep loudly, waking up Melissa and everyone else. Sometimes the tubing would become loose and formula would leak in her bed while she was sleeping.
3. Melissa never seemed hungry to try to eat anything.
4. Melissa sometimes complained that her stomach hurt during and after she was receiving the tube feeds, especially the bolus feedings. Mom noted that she would take the formula out of the refrigerator and place it in the syringe to give her the bolus. She would usually add her medications directly to the tube- feeding bag.
After listening to mother?s concerns, the nutritionist addressed each nutrition issue.
1. Melissa was on the same tube -feeding regimen that she was discharged on 6 months prior. A plan was established to transition her to 4 versus 2 bolus feeds during the day, and over time decrease the amount of formula she received overnight. The ordered a ?kangaroo? backpack? (portable pump) so she would not have to be so dependent on the large pump during the day and it would not be knocked over. The family would have much more freedom as to where the tube feeding was given.
2. While Melissa still needed some nighttime tube feedings, it was suggested to tape the tubing to her crib and run the tubing through the leg of her pajamas, leaving just enough ?give? so the tube would not kink at night. A special ?locking? device was ordered which would help the tube from disconnecting.
3. Melissa had become so dependent on her nutrition through her tube that she forgot about hunger and the association with eating food. She was also very leery of anything near her mouth. A referral to a speech therapist who specialized in feeding problems at her DEC was made, and regular appointments were set up to begin working on ways to increase appetite and acceptance of food near her mouth. As Melissa became less orally defensive, and began to eat more, the tube feeds could be decreased to see if she could maintain growth on less formula.
4. Formula given at a cold temperature can lead to stomach cramping, so it was recommended that she let it warm to room temperature prior to putting it in her feeding bag/syringe for bolus feeds. It was advised that Melissa?s medications were not directly added to the tube feeding, as this could affect how effective they are (one of them was a GI medication) and can also cause some stomach distress. It was decided that these two things would be trailed first before other formulas were explored.
Mother was pleased that a nutrition plan that addressed her concerns could be set into place without her having to drive 4 hours to the medical center with Melissa and her siblings. It was decided that she would follow-up every 2-3 months with the nutritionist via phone/videoconferencing, and would also make an appointment to see her local pediatric nutritionist to help adjust the tube feedings as the speech therapist worked with Melissa?s oral eating issues.
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