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Children suffering from renal insufficiency might be fed by a tube. In many cases, the feeding tube is placed in order to maintain the child’s stable fluid balance. Furthermore, children suffering from renal insufficiency often need to take medicine with a bad taste. For example Aldactone-Saltucin (aldosterone) is an essential diuretic that prevents potassium loss but has the disadvantage of tasting horrible.

With normal functioning kidneys the nitrogen waste products that result from protein metabolism are excreted via the kidneys. For people suffering from renal insufficiency these products build up in the blood and cause a reduced appetite. Many people with renal insufficiency get little enjoyment from food and can even be nauseated and disgusted at the thought of eating, they also often have to follow a low protein and low salt diet.

All in all, these are the reasons which might lead to placing a feeding tube:

  • An unappetizing diet
  • Bitter tasting medicine
  • Repulsion at the thought of eating
  • Lack of appetite
  • Need for tight control of hydration

These factors may occur individually, at the same time or may lead from one to another

Which kind of tube do these children receive?

In the majority of cases, a nasogastric tube is placed first. For the long-term tube maintenance, a PEG-tube is often used. Very frequently, the children do not even know what food tastes like and if they do taste it, for example with the assistance of a speech therapist, the children usually are given unappetizing food and in addition react in a defensive way.
It is important to proceed carefully in this situation.

The following steps should be considered:

  • Involving a local pediatric nephrologist
  • Discussing the medicine (for example: a diuretic and from case to case the administration of potassium)
  • Assessing how much fluid is needed
  • Defining the maximum protein level
  • Involving a dietitian
  • Taking the parent’s and the child’s situation seriously

These measures help to set up a treatment plan which is tailored to the individual needs of each child with renal insufficiency.

With this treatment approach the child has the possibility to learn step by step what hunger is and it also helps to deal with possible fears the child and also the parents or the involved doctors/therapists might have.

Helping child with a tubeBased on many years of experience, the NoTube coaching team helps the child in an ideal way and supports the child via telemedical support to achieve his/her transition to oral feeding from the comfort of the child’s home. It is, above all, the children suffering from renal insufficiency who should stay in their protected environment where they are not exposed to the risk of infection. An infection could significantly worsen the child’s condition, which is why any stay at the hospital should be avoided as much as possible. When these children take part in our Eating Schools, they meet only “healthy” children who are free from infection. Furthermore, our guidelines on hygiene ensure a trouble-free set up of the Eating Schools. 

In summary we can say: At NoTube we have worked with children before and after their kidney transplant and up until now we haven’t had any difficulties in helping these children, in cooperation with their parents, their local doctors and other professionals, to transition these children to autonomous oral eating and subsequently provide them with a piece of normal life.

Peter Scheer