Oral Feeding (with G-tube weaning)
We have a 22-month-old daughter who finally passed a swallow study a few months ago and seems to be very eager to eat real food. We were hoping for some more opinions about how to wean her from her G-tube. I know there are differing opinions on what the caloric needs of these kids are. All of her very well-intentioned doctors are of the opinion that more is best. She has had good growth to this point. At 18 months she weighed 17lbs., 2oz. and was 29.5 inches tall. Not long after that she got sick several times and lost weight. These illnesses were her first since her birth and they took a toll on her. She very recently weighed only 15 lbs. but in only 2 weeks time and during an ugly bout of diarrhea she gained a pound and a half, which leads me to wonder about how many extra calories she really needs. Her doctor wants to really gear up to weaning her with a new plan that I think might be too much food for her in a day and might hinder her interest in food. She has been on a diet of Pediasure. She was up to 3 1/2 oz. 4 times a day and a 10oz drip over night. She had a lot of trouble in the beginning with vomiting even past her Nissen, so I have gone very slow with increasing her volume. Her vomiting has virtually disappeared in the last several months but I have still been wary of going up too much. Now she eats 2 oz. of baby food by mouth about 3 or 4 times a day then I make up the difference at each feeding with the Pediasure and give her the drip at night. Her doctor wants to go to 64 oz. feedings a day (3 oral feedings backed with the Pediasure and 3 tube feedings) and he wants them to go in faster to help stretch her stomach. This really sounds like a lot to me and I wondered what some other experiences might be.
Pediasure has a lot of calories and may fill up the children. I would encourage you to also seek your daughter’s nutritionist’s opinion.
It also seems that sensory integration (which involves speech therapy and occupational therapy) helps with oral defensiveness and should help wean the child off of a feeding tube on to using the mouth. I think an occupational therapy evaluation (pediatric) for sensory integration would be my recommended next step.
In looking at the data for this child, the overall nutritional status is certainly concerning. I would need a better plot of the data, but using the data from 18 months and the current data, she is in significant nutritional deficit and risk. Given an actual weight loss over the past few months, things are concerning enough that the pediatrician and gastroenterologist are rightly concerned. If she has been vomiting through the fundoplication, it cannot be fully competent, (which is a common occurrence).
I would recommend you and her physicians establish priorities in this scenario:
- Establish normal nutrition for growth, development and neurologic improvement. This must be done by whatever it takes, intravenous hyperalimentation, or continuous tube, or bolus, or a balance.
- Make a daytime “hunger” by feeding predominantly by tube at night, so that the stomach and the GI tract is empty during the day (never allowing compromise of growth.)
- Start oral training and feeding counseling to enhance the pleasure and the competence of oral motor mechanics and feeding.
- Last priority is to go totally “by mouth” – and only if it is safe and fun, and only if growth is maintained.
DP/ TK 7-13-10
Legal Disclaimer: Please take note that the CdLS Foundation’s Ask the Expert service is comprised of volunteer professionals in various areas of focus. Response times may vary and a response is not guaranteed. Answers are not considered a medical, behavioral, or educational consultation. Ask the Expert is not a substitute for the care and attention your child’s personal physician, psychologist, educational consultant, or social worker can deliver.