7 reasons to free your child

How to select a tube weaning program

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Parents keep asking us which food they can offer during the transition from a fully fed baby by a feeding tube to a child starting to eat by mouth. Children transitioning from the tube tend to eat all kinds of special „diets“:

  • some love chips, peanut crackers (like Snips) or fries, which dissolve easily and are crunchy, salty and sweet at the same time;
  • Others eat only sweet things like chocolate or Nutella.
  • Again others, would start drinking the formula they had previously been fed by tube. They start drinking it by bottle for example Neocate (single aminoacids produced by using germs = biological production)  or  other formula-milk they are familiar with and stay with the nutrition they know.


For us therapists here at NoTube, these kinds of diets during tube weaning are perfectly fine with us. As we will see, nutritionally, most of them supply all the necessary ingredients a child needs.  As a result, we often experience that parents are not satisfied with this approach. They have been „brainwashed“ by their upbringing, their own values and their social circles that „healthy nutrition” is important for their baby or toddler. They have been told that eating vegetables, fruit and cereals, which have been harvested from „organic“ agriculture, are an absolute necessity if their child is to thrive. There are numerous emerging terminologies e.g. neutraceuticals and functional foods etc., that claim to provide additional benefits beyond basic nutrition. They have no importance for children normally, especially when they have been fed by infant’s or children’s formula until the tube-weaning started.


This leads to the question about what is known in reference to “healthy food”?

Actually, very little:

  1.    All food consists of carbohydrates, fats and proteins.

This is already true for ice cream and for milk and for most sweets. Especially when being made from the remnants of pigs, like gummy bears, they contain all three aforementioned essential items. This might be surprising but we would only additionally need some vitamins. In enterally fed children a lack of vitamins nearly never is an issue as enteral nutrition contains sufficient vitamin supplementation and it takes months to use all of the depots the body has stored. Some chips and crackers contain at least carbohydrates and fat. They lack protein. But while it is true that protein is essential the depot stored in a formula-fed child is normally sufficient for weeks, or even month. As a result, during tube weaning, the temporal lack of proteins is not a problem and the diet chosen by your infant, while it might be strange from a parental point of view, is perfectly acceptable from a nutritional point of view. However scientific literature provides us with guidelines to balance the proportion of three macronutrients during daily intake which will help body to continue normal physiological functions without suffering any deficits or overload. So roughly daily intake should be composed of 55-75% of carbohydrates, 10-15% proteins and 15-30% of fats. (2002 joint WHO/FAO Expert consultation recommendations).

  1.    Babies and toddlers may be aversive to certain tastes.

IMG_5002 (1)There are four basic tastes babies have:

  1. Sweet
  2. Salty
  3. Bitter
  4. Acidic


Sweet: In healthy children who did not undergo therapeutic treatment in a neonatal intensive care unit (NICU) sweet is the best taste.Phylogenetically (in the course of the development of men)  sweet is preferable because it contains easily digestible carbohydrates. This is why babies like sweet.


Salty & bitter: The interest in bitter and umami (the flavor of meat in the middle of our tongue) comes later in life when chewing is learnt. Jullie Mennella from the Monell Chemical Senses Center in Philadelphia has shown that in children born with very low birth weight taste might be altered. These children prefer sometimes from the beginning of their oral eating journey more salty and even bitter foods. Consequently, many of our prematurely born patients prefer salty and bitter tastes when transitioning from tube to oral feeding.


Acidic: Acidic tastes, such as lemon, is unfavorable for little kids. This is why the buds that are used for mouth cleaning in sedated children should not be flavored with a lemon flavor..


IMG_6122 (1) After being a “tuby” everything eaten by mouth is okay.


But whatever a child likes when starting to eat in later life after having been fed for months or years by tube is okay. The child has to take little steps, one by one and discover a land unknown to him or her. Anxieties of parents that their child will never eat “healthy food” are not helpful at all. When discovering something new everybody will be hesitant and will do it step by step. Steps may take weeks or months, even years. They cannot be induced. Some of our therapists advise mothers after a certain period to stop buying items on which the child may be fixated. But even that is mostly not urgent. The child in itself will change. Only when an Autism spectrum Disorder (ASD) is present it might take longer or need additional counseling.


However: the fashion of eating changes all the time, as does the idea of a healthy life. When and where famine is a daily experience fat people are seen as healthy. A chief would always be obese. Only recently managers became sport addicts and muscular up to their advanced age.


To sum up:

There is no such thing as “healthy food” in children after tube weaning. Research is inconclusive and subject to scientific “fashion”. There should be no denial to evidence based emerging ideas which can help humanity to improve quality of life. For men healthy food can be eating clean, whole food in its natural state. Be patient and follow the way your child takes when changing from tube-feds to oral eating. It will lead the way. The only thing that matters is: does your child eat and is it able to sustain itself orally by eating sufficient amounts of food? If the answer is yes, then everything else is a luxury. If the answer is no, what are your challenges? Leave a comment here! We’ll answer all questions.

Peter Scheer