How Can You Help Your Tube Fed Child Learn to Eat?

By Dr. Margueritte Dunitz-Scheer, NoTube Eating School

As a senior pediatrician and developmental child psychotherapist, my expertise and passion in my professional life are helping children who have been tube fed since birth or for most of their lives to earn to eat. I love observing the diversity of tastes and textures of foods in various cultures!

No Tube Feeding

More than 30 year ago, I became aware of the "intrusive character" of tube feeding in spite of understanding that modern high-tech pediatrics would and could not exist without the support of ENS (enteral nutrition support) for medically fragile children (MFC) in medically critical phases of their lives. I have worked all my professional life at a large University Children's Hospital in Austria and have been privileged to set up a treatment unit for eating disorders with my husband. Here our devoted interdisciplinary team has developed a highly effective method of tube weaning a based on clinical evidence and tested by critical analysis on safety and efficacy. Our team has been teaching and lecturing at conferences and courses all over the world.

It is True that Everybody Can Learn to Eat?

Well, with the exception of children suffering from severe dysphagia who cannot swallow their own saliva or have instable breathing with risk of aspiration, practically all infants and kids can learn to eat, since learning to eat is a genetically programmed intrinsic part of human development and a crucial condition for ensuring growth on a nutritional and social level. As soon as saliva can be swallowed without choking or gagging, we know that the technical part of the complex neurological act is working sufficiently. If children even can already swallow water, the road towards oral enjoyment of foods is open!

No Tube Feeding

When Can my Tube-fed Child Start to Learn to Eat?

As soon as the critical phase of the underlying medical condition (operation, extreme prematurity, intensive care and respiratory support) is over or has stabilized in a way that your child has been discharged from the medical setting and is at home, the time has come to try and get rid of unnecessary medical equipment. A tube is an essential and indispensable tool used for bypassing the mouth and esophagus during intensive medical care, but when your doctors and therapists allow oral feeding to be started, the task of transitioning to oral feeding must be tackled.

We know from the studies made on large groups of tube-fed children that having a feeding tube influences speech development, self-help skills as well as all motor, cognitive, emotional and social abilities negatively. The earlier the transition is made, the easier and the better!

Will This Also Work if my Child has Disabilities?

Personally, I don't really like to use the term "disability." It's far too general, too judgmental and not specific enough since it will never match the uniqueness of your child and its individual pattern of abilities and possible difficulties. Every person has abilities as well as some areas of development in which he or she is not achieving a main-stream level of skills! Most of these gifts are self-determined and some will be open for therapeutic support.

No Tube Feeding

In the case of children receiving ENS, the main handicap is the tube itself (nasogastric, PEG or J-tube) and the amounts of high caloric nutrition flowing into the child in predetermined times and portions. Often tube fed children also suffer from a range of unintended negative side effects like recurrent vomiting, gagging, retching and restricted tolerance of the tube feeds itself and might show a certain degree of malnutrition, even if exclusively fed on specific tube formula.

We have weaned hundreds of children with the following medical diagnosis: Prematurity various cardiac anomalies, diaphragmatic hernia, esophageal atresia, all kinds of congenital anomalies of the upper and lower gut, chromosomal deletion syndromes, children after organ or bone marrow transplantation, Costello, Noonan, CHARGE, Silver Russel, Pierre Robin, CHI, ASD, GERD, FTT, just to name a few of the most frequent. Many children show severe or mild developmental delay, sensory issues and deficiencies in various areas of perception and emotional regulation. 

How Do Eating Schools Work?

After a phase of online assessment at notube.com with the goal of checking the suitability of your child for the tube weaning process itself, there will be a one week phase of preparation performed at home. At this time, the tube feeds are already reduced slightly with the goal of changing the current tube feeding routine and establishing some hunger and self-motivated eating abilities.

When you actually arrive at the EAT-Campus, your child will be integrated for 2-3 weeks in a daily schedule of play picnics (9am, noon and 5pm) and receive specific feeding counseling and guidance by the feeding coaches depending on its preexisting skills and individual needs. Each child is seen by a pediatrician every day and receives intensive supervision and support as the volumes of the tube feeds are continuously reduced. Additionally all parents are involved in individual and group support sessions to help work through the "mental dependence" which tube feeding often produces.

No Tube Feeding

After the Eating school finishes, we follow up with every child and family on our online platform again until the child is fully and exclusively on sufficient volumes of oral feeding and shows a stabilization of its weight.

What Is the Success Rate of our Program with the Eating Schools?

Nearly 90% of all formerly tube-fed children graduate from our program on full and sustaining oral feeds! In most cases, the load of negative side effects diminishes drastically after the weaning and the child is finally "free" to progress in many areas of development!

The key to our approach and philosophy is the respect of the child's individual, suppressed but inborn knowledge on eating development. We are proud of an overall excellent success rate as shown in a recent international publication comparing various tube weaning programs. Combined with the support the online program can offer, parents of children with severe and complex disabilities have been astonished to find their child suddenly eating and drinking itself without the need for tube feeds anymore.

The main age group of visitors of the Eating Schools is 1-10 years. In only about 20% of all children visiting the eating school, the duration of time needed for the complete weaning process exceeds the 2-week time frame. These children are fully weaned and followed up after returning to their homes for up to one whole year.

Visit www.notube.com and use our free evaluation interviews which will let you ask questions and receive specific answers. Our goal is to help you to feel secure and confident in trusting us to help you and your tube-fed child move towards the joys of natural eating!

The dates for our Eating Schools in 2016 are:

  • March 7-18
  • April 18-29
  • May 16-27
  • June 13-24
  • July 4-16
  • July 25 – August 5
  • August 22 – September 2
  • October 17-28

About the author:

Dr. Margueritte Dunitz-Scheer is a senior pediatrician and developmental child psychotherapist at the NoTube Eating School, www.notube.com.

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