Information about our tube weaning program for medical staff

This page has been set up primarily for parents seeking information. Their field of interest is the phenomenon of eating behaviour disorders of infants and young children and in particular tube dependency. The EAT-DOC’S team offers coaching, assessment and treatment of these disorders, for which much information can be found on this webpage.
Nevertheless, this very sector of the webpage is for you!

Now your patient is our patient!
Modern times and global information systems allow parents to become experts on any specific medical problem of their child. They have mostly spent months of their lives on intensive care units and are more or less grateful for the help they received with their child and – mostly depending on the medical and developmental outcome - are more or less traumatised by their experiences with the various professionals they have met in the voyage of their child through the medical world. The eating or feeding problem might be one of the last urgent problems they face and might seem to have an inappropriate meaning for them from your point of view. Nevertheless as being a physician who has been involved in the child’s problems up to now, you might feel concerned and responsible for this too.

This is where we come in
We define ourselves as specialists in this field and have scientific interest for all questions concerning the reasons why early eating behaviour disorders develop, the clinical methods applied for treatment and specific questions of research. We have been treating a large international population of highly selected young patients (more than 700) for years, whose joint feature was to be suffering from various severe problems that were considered as “incurable” in their home cities. We offer a unique mix of expertise and know-how for the physical and various medical aspects as well as the psychological and psychodynamic squeals and distorted family patterns, which can develop when children don’t eat. At the same time we would like to state very clearly that each child needing our highly specialized and specific support at the time of contacting the EAT-DOC’S team, needs your backup, moral support and help too!

Ethical and legal aspects, an anecdote
A child breakes its leg. It is given a cast. After 6 weeks the cast is removed and the child is allowed to use its leg again. But the leg looks and feels different than before; it is pale and the muscles have disappeared.

A) The experienced physician will tell the child and the parents that things are alright and that the leg will all resume its former function but that this process needs some time.

B) An inexperienced physician will tell the child that it must regain all former abilities within 48 hours and in the case of failure, he will recommend to order a wheelchair for the child. So it might even happen, that the child finds pleasure in using a wheelchair, the family receives additional money because the child is handicapped now and the leg will get worse and worse the longer the wheelchair is used! This would probably be a case for child protection services.

C) It might also happen that nobody told the parents when to take the cast off and the cast just got forgotten on the broken leg for months! This would be a case for a legal action against the poor surgeon who put the cast on and the family suing him will most probably get a lot of money!

The same story could be told about a broken bone and a metal screw put into the place of the fracture, thus substituting the cast by the screw. In this case the story will not sound so absurd at all and the surgeon will need to get a very good lawyer to get him out of trouble. The broken leg in this analogy is the feeding problem and the cast or the screw can be substituted by administering a feeding tube.

It seems unethical to recommend or administer feeding tubes intended to help and support a child temporarily for a defined problem and for a certain period of time and not to care or to know what to do, when the time of tube feeding is over. Since tube dependency as yet is not recognized as even being a problem on its own behalf by many physicians involved, we are far from being able to use the story as comparison, but try to put emphasis on a point of real negligence within medical systems.

What do we ask you for?
We kindly ask you to tell us frankly if you have any reasons or concerns why the child should not be weaned at all or why the time for doing so might not be appropriate. There might be medical arguments (e.g. cardiac operations within a short period of time), growth related arguments (has tube placement changed the weight problem clearly to the better or do negative side effects overrule any possible positive effects?) or psychological arguments (e.g. are the parents emotionally stable enough to help their child to make a substantial developmental change after prolonged tube feeding) which make you think that the project should not be performed at all or that it even might be dangerous (e.g. unsafe swallow function, risk of aspiration).
Please do share this with us by contacting us via tubeweaning@notube.at
If you agree that weaning the child off its feeding tube is a good idea, then we would kindly ask you to be prepared to see the child during the 1-2 critical weeks after starting reducing the feeds or also during the after phase. A supportive backup system of medical professionals and family resources are crucial for securing the parents which again is crucial for the child which should make a big step forward in its eating development.

Netcoaching is -
a psychotherapeutic consulting method and can only take on medical responsibility with patients who decide to come to Graz and engage in our in- or outpatient program. For all patients receiving help and support via netcoaching, we cannot take on medical responsibility and kindly ask for your assistance in the project. This would involve weighing the child before we start, and weighing the child on a weekly basis until the phase of weight loss (approximately 1-10% of former body weight). Weight loss is less in children with PEG-tubes less if the child already masters certain oral abilities before the weaning process starts. The phase weight loss is influenced by the speed of oral intake abilities and usually stabilzes within one month. We are very interested in following our weaned patients up and would be grateful for any communication with you on any patient related matter or topic. I would like to thank you for sharing any concerns or offering support, since it is very important to let the parents know, that any kind of professional academic debate will be discussed openly and a joint goal will be defined before the netcoaching starts.

Diagnostic assessment
The diagnostic assessment of early feeding behaviour disorders cannot be performed by means of ICD-10. The international classification system DC:0-3R is the only diagnostic system which supplies at least six subcategories of early feeding behaviour disorders. The system is compatible with DSMIV-R and needs classification on five independent levels of functioning including medical, developmental, social and relational items. The EAT-DOC team was part of the Task Force Team of the NCCIP (National Center for Clinical Infant Programs) who published the manual in 1994 and came up with the first revesion (DC:0-3R) in 2005 (Washington, D.C.: ZERO TO THREE Press).

- DC:0-3R Classification (0.15MB, .pdf)

Sincerely yours,

Univ.Prof.Dr.med. Marguerite Dunitz-Scheer