7 reasons to free your child

choose the most suitable tube weaning program fro your child

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Tube weaning from the tube weaning team’s perspective consists of several steps:

      1. A precise and transparent assessment to determine whether the child, from a medical standpoint, can be weaned from the tube;
      2. The getting to know of the child and his/her family;
      3. The reduction of tube-fed nutrition, in order to give the child the chance to develop hunger and become receptive to oral food offerings.
      4. The support of the child and the parents throughout the entire weaning process;
      5. When the child begins to eat;
      6. The aftercare.

The present text does not constitute a manual for tube weaning at home, but is designed to give an overview of the phenomenon of tube weaning from the perspective of a doctor. Unfortunately, there are always some families, who try to wean their child from the feeding tube on their own and fail in the process, and as a result contact us with a plea for help. In the following paragraphs, we are going to outline the essential steps of tube weaning in such a way that parents, but also experts can understand our process better, while not specifying millilitres or describing concrete procedures, which would be applicable to a specific child. To conduct tube weaning without an experienced team is dangerous and can negatively affect the children as well as the rest of the family.


      1. Assessment:

To ensure an adequate, medical assessment, some essential child-specific information is collected in advance. The biometric, medical, nutrition-related and tube-relevant data of the child is gathered through an online parent questionnaire. Further, medical reports from the hospital stay after birth, any other relevant medical reports on the child, as well as – if there is a very long patient history – a summary by the parents are compiled. Sometimes it can happen that medical reports are written in a language, which none of our team members can read. In these cases, we ask the parents to have these reports translated. It is important for us not to overlook something: we want to know whether your child can swallow and how reliable the swallowing is. But we also want to learn about significant underlying diagnoses, as well as be informed about all surgeries, those the child has already undergone and those that are planned in the future. Just as important are the paediatric neurological assessments and test results by other specialists, who have examined your child. Only based on this information and with a holistic approach, can we ensure a valid assessment, and ultimately decide whether we can join the family on their journey of tube weaning.

As part of the assessment, we also analyse video(s) of a typical eating situation (duration one to two minutes). This allows us to get to know the child in his interaction with food and we gain insight into his oral skills. Relevant is everything that concerns the child and his family: how does the child eat, how does he move, how do parents, or even grandparents, act? Which parenting ideals, which feeding methods play a part? If the child has special needs: how is that dealt with? What position is the child in when he is fed: highchair, rocker or does the child have to be lying down? Does he eat standing up and running around, or does he sit at the table? Do the other family members eat while the child eats, or is he being fed on his own? How does the child react, and how does the person feeding him react to the reaction?


      1. Getting to know the child and the family:

As a multidisciplinary team, consisting of paediatricians, psychologists, a music therapist and a physiotherapist, we try to discuss our first impressions with the family. What goals does the family want to achieve? What is realistic? What support can, for example, a mother expect during the tube weaning process? Is the child healthy now or does he have restrictions? Can the child already hold the food himself, can he sit, can he control his environment by himself? What prior experiences do the parents have? What therapies have already been tried and what success has been achieved with these treatments? In addition, we also want to gradually build mutual trust. What questions do the parents have at the beginning of the process? Are they worried their child will lose weight? How do the attending physicians at home feel about the transition to oral nutrition? How much weight loss can be risked with the specific child? Is the child taking medication (which we already know about from the assessment process) which tastes bad? Can and should we change or discontinue the use of these medications, in consultation with the treating physician?


      1. Reduction of tube-fed nutrition:

To create an appetite, it is necessary, with most children under our care, to reduce the amount of tube-fed nutrition. We always proceed on an individual basis and in accordance with the child’s underlying diagnosis, ensuring that the child receives sufficient overall volume. Since the process does not work without the development of appetite/hunger, the reduction step cannot be avoided. For, if the child is always full, he cannot develop an interest in food. Our research has shown that the amount of enteral nutrition needs to be reduced as quickly as possible. Only if we eat less within a short amount of time, do we develop an appetite for food. If nutrition is reduced very slowly and hesitantly, conditions resemble those of malnutrition during times of war or food shortages. The hunger-satiety system adjusts to the reduced amount of nutrition and one learns that there is less food now and consequently one eats less. In children, who have been reduced this slowly, one can often observe this adjustment within days already. When the child experiences (for the first time) appetite or the desire for food, this will increase his own interest in food and make him receptive towards food intake.

Since the reduction of tube-fed nutrition requires good instincts and expertise, it is impossible for parents to take this step on their own.

The trust that parents and the whole family of the child place in us develops as part of this process: it is only natural that parents are feeling desperate when their child receives less tube-fed nutrition and does not start to eat right away.

Indeed, it can take a few days or even weeks until the penny drops in the children’s minds. Often, the child does not know, or does not want to know, what to do with the food. He may not be used to swallowing and needs to learn it first. This takes time. Many tube-fed children have come through a difficult time and are predisposed to anxiety. This anxiety has to be alleviated gradually. There also may be other stressors, on the part of the child, or within the family context, which occur during the process, which is why daily communication with the parents/the family is necessary. We recommend that parents communicate with us 1x/day, especially during the more delicate early stage. Our coaching team is available 24/7 and this availability triggers and allows for trust to build and for us to get to know one another.


      1. The support of the child and the family

Following the start of the tube weaning, the difficulties of re-learning set in. Often, it is not just the child that is “tube-dependant”, but also his environment. So far, the family has only been trained in how to administer the child’s precise amount of caloric intake. During the tube weaning process, this now changes step by step. Parents are getting to know their child in a new light. Questions such as “Has my child eaten?”, “How much has the child swallowed, how much has been spilled?”, “Why has the child not had a bowel movement for two days running?”, “Can the weight be accurate, if it is only at this level as a result of the lack of bowel movements?”, “Has the child had enough to drink, or will he be dehydrated?”, “Can a child even dehydrate?”, etc., are understandable, come up frequently and will be answered by us as part of the therapeutic dialogue. Of course, the answers differ from child to child. Every family asks different questions and receives different answers. In this, we not only draw on years of experience in the hospital, but also on tube weanings online and on the scientific analysis of our work. This scientific analysis is necessary to prevent doing something that may be wrong without reviewing the corresponding results. One could also consider this to be the highest form of quality management.


      1. The moment – the time period – when the child begins to eat.

Often, the child suddenly starts to eat. From a hesitant interest develops the intrinsic desire to eat. The child demands food independently, wants to touch it and even guides it to his mouth. Not only the parents, we too, long for this moment and delight in its arrival with the child and his family. We know this is a delicate phase: the journey, which has now begun, will have its highs and lows; sometimes there can even be setbacks. The child (just like we adults) will not eat equally well every day: some days will be better, some worse. Also, the parents won’t behave in the same way every day: there will be days of security and days of despair. During all those days, we are present, offer support and are there for the families. In this phase, the quality of the food and the nutritional value only plays a minor role. Parenting ideals, such as table manners also do not matter during this time. If the child is able to eat by himself, it is also a good idea to make food available in the immediate proximity to the child, day and night, so that he can decide himself when he can and wants to eat. This should be a child’s paradise, which he is allowed to exist in during this phase.

It is crucial that the child learns to eat independently and demonstrates – or in the case of an older child, communicates – his need for food in such a way that his environment can react to it.

There is a transition period during which the child already takes food, but not in sufficient quantity to meet his energy needs. During this phase, a decision is made daily regarding how much tube nutrition will still be needed to support the child. How long it takes from this point, until the tube feeding can cease completely, can differ widely and depends on a variety of factors. Even if tube feeding had been stopped completely, it may be necessary, on occasion, to return to an interval of tube feeding, for example in the event of a cold. We respond to all of these changes individually.

This phase is often perceived by parents as turbulent or strenuous, but it is completely normal and is part of the weaning process. We support the family during this phase intensely, regardless of how long it lasts.

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      1. The aftercare

We deem a child to be tube-weaned when, 35 days after the last tube feeding, he feeds only orally with an at least consistent weight development. Sometimes it can happen that our treatment is not concluded at this point. The child may have learnt to eat, but the parents are not confident enough yet, and do not fully trust the child, for them to be released into autonomy without our support. Some children also stick to just a few food items, which are not sufficient for healthy nutrition. Some only learn to deal with solid foods with difficulty and are afraid to choke on small crumbs. Some children have such special needs that, while they can eat, one could not go out in public with them, because the spill or soil themselves with food or display other behaviours, which are not socially acceptable.

It may also be the case that the child’s medical environment is not happy with the results of the tube weaning. Doctors may argue that the child is too slim now or that the ingested food is not meeting all requirements. There are many other questions, which may come up after successful tube weaning. For this reason, we have developed an aftercare program, called Learn to Eat (LTE). It is designed to give parents the chance to learn that it mostly takes time and patience to understand the situation with all its highs and lows. Because understanding the self-sufficiency of their child can and may take some time.

In conclusion it may be said that tube weaning and the learning of independent eating are fundamental developmental processes, which involve the entire family.

Best is if an interdisciplinary team with sufficient expertise supports you and your child in the process of tube weaning.

Peter Scheer