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Tube Feeding and Tube Weaning: Part 2 - Answering Parent Questions

In last week's blog, I discussed parent questions and emotions around the decision to place a feeding tube. This week I continue the topic of tube feeding and share some of my experience about weaning children from their tubes when the time is right.

As discussed in Part 1 last week, every child and family has a unique experience with tube feeding; some children need a feeding tube for a very short time, others may require tube feedings for several years, and some kids will need a tube for their lifetime in order to support their health, growth, and nutrition. 

It's my belief and practice that regardless of a child's unique needs with a feeding tube, there is always something that can be done to provide positive oral (mouth) experiences. Even for children that are not able to eat safely, we must not forget their mouth and all of the senses we engage while enjoying food. For a child that is tube-fed, this could involve receiving a tube feed during family meals, or smelling, touching and playing with foods. Babies can be held and participate in touch and oral stimulation during tube feedings. Older children can be involved in their tube feedings and help administer their feed. They can grocery shop, cook, and play with food even if they are not ready to eat due to safety issues or feeding delays/aversion.

Many of the families I have worked with over the past 20-years are anxious to wean their child from tube feedings. They often express that they want to move away from tube feeding dependency but don't know how to start. The very earliest stages of the tube weaning process can involve preparing the mouth for food through positive touch and stimulation. Tube weaning is much more than reducing calories, it can begin with introducing a mealtime routine, even for kids that are not yet eating by mouth. Food exposure through sensory play, cooking, and family meals can help children to become more comfortable around food.

Common Questions from Parents

Parent Question: When will my child be ready to wean off of tube feedings?

  • Your child’s medical problem that warranted tube feedings is resolved or stabilized.
  • There are no upcoming procedures/surgeries.
  • Respiratory status is stable to support oral feeding.
  • Your child is tolerating bolus or a "meal" of tube feeding without vomiting.
  • Your child is safely swallowing food/liquid without much spit-out.
  • Nutritional status is good, and your child has at least some nutritional reserves.
  • Appropriate team in place including supportive family in agreement with transition plan.

Parent question: What are the barriers to weaning from tube feedings?

Appetite Issues: Children with a history of long-term tube feedings did not have the opportunity to build associations between eating and reducing hunger. All of their nutritional needs have been met by tube. Weaning tube feedings gradually with the support of a medical team (RD and MD) can lead to increased understanding of hunger and satiety cues.

Gastrointestinal (GI) Issues: Tube feedings can increase gastroesophageal reflux. When pain and discomfort become associated with mealtimes, eating can become a negative experience. If parents are observing tube feeding intolerance (e.g. vomiting, abdominal pain, diarrhea, or constipation) the child’s MD or RD should be contacted. Children will ongoing GI challenges, often demonstrate difficulty progressing toward oral feeding.

Growth Issues: Sometimes children demonstrate weight loss or a plateau in their weight during a trial with tube weaning. Tube weaning needs to be closely monitored by the child’s medical team in order to ensure that the child is growing adequately while learning to eat by mouth.

Medical Issues: Children with ongoing medical or swallowing issues are not typically good candidates for tube weaning. If a child has an upcoming surgery or procedure, they often require their feeding tube to support their growth and nutrition before, during, and after the event.

Parent Question: Should my child be tube fed overnight or during the day?

When weaning tube feedings, I have had better success when children are not receiving an overnight feeding. In my experience, overnight feedings can interfere with hunger cues and appetite during the day. Whenever possible, I work toward eliminating overnight feedings and offering bolus tube feedings during the day. This allows kids to experience feelings of hunger and satiety on a regular mealtime schedule while they are awake and aware.

Please note: Not all children are able to tolerate their tube-feedings during the day and need overnight feedings. Remember, that every tube-feeding situation is unique to each child and family. Any changes to your child’s tube feeding schedule should be reviewed by your child’s medical team.

Parent question: How much will the tube volume be reduced?

Any tube weaning plan must involve an interdisciplinary approach. I work closely with a team of which typically involves a Registered Dieticians (RD) and a Physician to wean a child from their feeding tube. It is essential that the child is closely monitored during the tube weaning process to ensure growth, hydration, and appropriate nutrition. 

When a child is judged to be ready for a tube-weaning trial, the team may begin with a 25% reduction in calories over a 2-3 week period to observe any changes in appetite. A baseline weight and assessment of hydration is completed for comparison. If the child's nutrition and hydration status remains stable, further weaning can be trialed in increments of 25% every 2-3 weeks. Some children lose weight during a tube wean and others are able to maintain their weight. Occasionally kids even show some weight gain during a tube wean, as they demonstrate increased hunger and oral intake when their tube feedings are reduced.

As I said, any tube weaning attempts should be planned and monitored by an interdisciplinary team including the child's family, Feeding Therapist, RD, and Physician.

Parent Question: At which feedings will the tube feeding volume be reduced?

Tube volumes can be reduced using various approaches. Sometimes a percentage of each feeding is removed to create hunger. Other times, an entire feeding is eliminated. In my experience, eliminating an entire feeding (of approximately 25% of the total daily calories) works well to stimulation hunger for the next meal.

Parent Question: When will tube feedings be given during weaning?

Again, there are different ways to approach this. Some children will participate in mealtimes and eat by mouth followed by a "top-up" by tube. As oral intake increases, the top-up is decreased or eliminated. In other situations, a bolus feeding might be given mid-day between meals or before bedtime with no top-ups after meals. Sometimes some meals are topped-up by tube and others are not. Your child's feeding/medical team will work with your family to determine the best approach for your unique situation.

Parent question: What if my child loses weight during the weaning trial?

It is possible that a child will lose weight during tube weaning. Weight loss should be closely monitored by an RD or Physician. Sometimes weight loss is expected and acceptable; however, in other situations a child may lose too much weight and tube feedings need to be reinstated. I encourage parents to try not to feel too discouraged if a tube feeding weaning trial was not successful. Sometimes children are not ready. A 2-3-week trial can provide an opportunity to assess a child's readiness for increased oral intake. I have worked with many children that were not ready for their initial tube weaning trial, but had great success at a later time.

Parent question: How long will it take to wean from the tube?

Every tube-feeding situation is different. Some children may wean quickly from their tube if they are medically stable and do not present with ongoing feeding delays or aversion. Another child’s journey toward oral feeding may be slower with tube feedings being very gradually reduced over many months or even years. 

Parent question: What needs to be in place before we start a tube weaning?

  • An interdisciplinary medical team
  • Caregivers are in agreement and on-board regarding tube weaning
  • Reflux and GI issues are well managed
  • Your child is able to safely swallow food and liquid
  • Your child is able to drink from a cup/bottle/straw
  • You have a mealtime routine (e.g., family meals with 2.5 - 3 hours between feedings)
  • Bolus feedings vs Continuous whenever possible
  • Daytime tube feedings whenever possible 
  • Your child has demonstrated a period of good growth
  • Your child is eating a variety of foods from different food groups
  • Your child is swallowing foods consistently vs spitting-out

Weaning from tube feedings is a complex but achievable task for many children. In order for your child to be successful, it is essential to seek the support of a qualified Feeding Therapist, Registered Dietitian, and Physician if you are considering weaning your child from his/her feeding tube. This team will work with you to develop a safe approach that meets your child and family’s unique needs. This blog shares my perspective on tube weaning based on my experience in the home-care medical model; however, there are many wonderful clinics and programs specializing in tube weaning. I encourage parents to seek out a variety of options, programs, and resources when looking for tube feeding and tube weaning support to place their child on the path to successfully orally feeding.

 Disclaimer: The FeedingPlus website feedingplus.com does not contain medical advice. The contents of this website/blog, including text, graphics, images and any other material are intended for informational and educational purposes only and are not intended to substitute for professional medical advice, diagnosis, or treatment. Please consult your physician for medical advice. Always seek the advice of a physician or other qualified healthcare provider with any questions regarding your child. Never disregard or delay seeking professional medical advice or treatment because of something you have read on this website or the internet.

References/Resources:

Books

Pre-Feeding Skills (Therapy Skill Builders): Dunn-Klein and Evans-Morris, 2000

Evaluation and Treatment of Pediatric Feeding Disorders from NICU toChildhood (ProEd): Fraker and Walbert, 2003

Food Chaining The Proven 6-Step Plan to Stop Picky Eating, Solve Feeding Problems, and Expand Your Child's Diet: Fraker, Fishbein, Cox, and Walbert, 2007

Pre-Feeding Skills, Second Edition: (Therapy Skill Builders): Suzanne Evans Morris and Marsha Dunn Klein, 2000.

Feeding and Nutrition for the Child with Special Needs (Therapy Skill Builders): Marsha Dunn Klein and Tracey A. Delaney, 1994.

Websites

Marsha Dunn-Klein Get Permission Approach: https://www.getpermissionapproach.com/

Marsha Dunn-Klein: Tube Feeding Information: https://www.getpermissionapproach.com/tube-feeding

Susan Evans-Morris: http://www.new-vis.com/fym/papers/p-feed12.htm

Kids With Tubes: ww.kidswithtubes.org

Kids Health: https://kidshealth.org/en/parents/g-tube.html

About Kids Health: https://www.aboutkidshealth.ca/article?contentid=2822&language=english

Feeding Tube Awareness: https://www.feedingtubeawareness.org

SickKids: http://www.sickkids.ca/IGT/About-Us/What-we-do/G-Tube-Program/index.html

Canadian Pediatric Society: https://www.cps.ca/en/documents/position/gastrostomy-tube-feeding

A Look at Blended Tube Meals – Part 1: http://depts.washington.edu/nutrfoc/webapps/?p=1050

A Look at Blended Tube Meals – Part 2: http://depts.washington.edu/nutrfoc/webapps/?p=1048

 

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