by SABINE MARINSCHEK
Reposted with permission from No tube, https://notube.com
The most frequently discussed aspect of tube weaning is the reduction of tube feeding. Should the amount of nutrition be reduced and, if so, how much and how fast?
Raging myths abound and range from, ,,the child will suffer severely” to ,,further development will be compromised” or even ,,there might be life-long consequential damages due to malnutrition”. Statements such as these lead to doubts and concerns in already burdened parents and may hinder the possible and necessary transition from enteral to oral nutrition.
But, what is the truth about these statements? And, what needs to be considered in making this important decision?
Here is some information from our experts perspective:
1. Feeling hunger is a precondition for learning to eat!
Based on our decades of experience with hundreds of tube fed children, we can honestly say: Without hunger it doesn’t work! Imagine you are served a giant ice cream sundae (with cream!) after a 6-course-menu. Your enthusiasm to eat it will likely be fairly limited . That’s how fully tube fed children feel when presented with oral offers. At the very least, their experience of extreme fullness will cause refusal with vomiting as a common last resort. To take an interest in eating, it is necessary that a child gets hungry, a natural result of the reduction of tube feeds.
2. Feeling hunger does not mean you are starving!
This is a crucial aspect of this debate. A child needs to feel and recognize hunger and learn how to solve it. But, the child should not suffer or be in pain; neither should the medical state of the child be influenced! Therefore, the reduction of tube feeding must be supervised and closely monitored by professionals in order to guarantee the basic caloric requirements and hydration of the child.
3. Tube feeding reduction must be supervised by experts!
Reduction of tube feeds by people who are not specifically trained in this field can be dangerous and, in the worst cases, even lead to severe health deterioration requiring medical treatment. Uninformed, but not entirely uncommon, attitudes, such as, “if we remove the tube, the child will start eating at some point” may also have severe and dangerous consequences. Reduction of tube feeds is a highly specialized procedure that must be tailored to each child’s individual needs – based on different variables, such as medical history, growth and oral development.
4. A child must be allowed to experience food while it is hungry!
Children who are learning to eat are like newborns in their eating development, regardless of their actual age. Frequent small meals and ongoing exposure to food and textures that are easy to handle are important. Smelling, tasting and playing with food is a completely different experience for a hungry child compared to one whose stomach is completely full!
5. Tube feeding reduction can not be immediately compensated by oral eating!
A child who has been tube fed for months or even years must catch up on their eating development. This can’t happen within hours, or even days. It takes time for a child to increase their oral intake sufficiently to compensate the missing tube feeds.
6. A short-time reduction of nutrition does not lead to developmental impairment!
Of course, sufficient nutrition is important for growth and development in the long-term. A short-time reduction of nutrition, however, does not compromise development. On the contrary, Dr. Hannes Beckenbach (Developmental impact of a standardized tube weaning program) was able to show, that children made significant developmental progress after weaning.
7. “Unhealthy” food is important and allowed during tube weaning!
Learning to eat involves both physiological and psychological efforts. It is often hard for children, from a motivational and technical point of view, to eat large meals, especially when the oral region hasn’t been used for a long time! Therefore, it is important to offer high-caloric food with little volume. “Empty” food such as special vegetables, even if considered as “healthy” are not ideal during this phase. Of course, a transition to a balanced diet should be made. However, for the first phase of the learning-to-eat process, it is important to offer attractive, high-caloric food.
These are all important factors that should be considered during a tube wean. The long-term goals of tube weaning are age- and developmentally appropriate oral nutrition and adequate growth of the child. Some weight loss is to be expected during the early phase of tube feed reduction and while increasing the child’s oral activity. However, it is important to remember that the entire weaning process will take place over the course of the months following the initial reduction in tube feeds. There is ample time in the process as a whole for children to develop the necessary skills and achieve the long-term goals. Please stay patient and be proud of your child; the steps they are taking are giant ones!
I basically agree that hunger provides a major support for a child’s transition from tube feeding to oral feeding. However, if it is essential, what is the prognosis for children who have damage to the hypothalamus and do not physiologically experience hunger or satiation (and may have other hypothalamic symptoms such as defective temperature regulation)? I have worked with a child with this diagnosis. Our focus was on pleasure of tasting food, sensorimotor skills for early feeding and a strong sense of eating for pleasure and social connections at mealtimes. In order to prevent overfeeding and allow for space in her stomach to accept larger portions comfortably, we offered her meals approximately 3 hours after the last tube feeding. She gradually learned to eat larger amounts by watching family members and enjoying sharing the meal with them. At that point she fully weaned from the tube. Interestingly, the next stage was helping her monitor her body cues for fullness. Because she had no inner cues for satiation, she would continue eating as long as food was on the table! We helped her feel the amount of tension in her abdomen as a compensatory cue. When her abdomen became slightly distended and tense, it was her body’s way of communicating that she should stop eating. This experience reminds me of the tremendous importance of mealtimes and the social environment in learning to eat. It is possible for kids to learn to transition from a tube to full oral feeding without experiencing the physiological cues of hunger.