NoTube’s website has been set up primarily for parents and professionals seeking information in the field of tube feeding and weaning and various eating disorders of childhood. The addressed field of interest is the large spectrum and phenomenon of eating behavior disorders of infants and young children and in particular tube dependency. The NoTube team offers assessment, coaching and treatment of these disorders, for which detailed information can be obtained on this webpage.

The “normal” child

Learning to eat is a normal process in a child's development. This process needs common sense and a basic set of parental skills in sensitivity, cue reading, commitment to want to feed and an engagement for the child's growing sense of autonomy and self-competence.

The “special” child

However, when a baby is born prematurely or suffers from a physical anomaly needing immediate surgical intervention or is suffering from any other severe pediatric disorder, then things are all different. Suddenly the essential developmental step of learning to eat is failing to develop normally. Thus a feeding tube is often given to the infant or child. Succendenly the child might become tube-dependent – a problem arising from a lack of an exit plan.

Early eating behavior disorders – my child does not eat

There are 3 kinds of tubes that can ultimately lead to tube dependency and prohibit the enteral feeding process:

• NG tube (also referred to as NG-tube or nasogastric tube)
• G tube (also referred to as G-tube, PEG tube, percutaneous endoscopic gastrostotomy tube or Mickey/button tube)
• J tube (also referred to as J-tube, PEJ tube or Jejunostomy Tube)

The NG tube is normally administered when short time enteral feeding is planned, like in prematurely born infants, or after a heart operation. To place the tube is comparatively simple and can be learned by parents themselves. Nevertheless it should only be given for a short periode, not more than approx. 3 month utmost.

The G tube is placed endoscopically in the belly. In most countries this is done by the gastroenterologist who also prescribes the enteral feed. Sometimes, if reflux is the reason for a G tube, a fundoplicatio is done concomitantly. The G tube can stay even between 3 month and a year. If possible a G tube should be used which can be removed without anaesthesia. A micky button can be given afterwards if insecurity whether the child will be able to sustain its food requirements itself (like in swallowing problems, or severe reflux) can be given afterwards.

The J tube is normally a second choice if severe reflux or other enteral problems (slow empting of gastric content etc.) is persent. The pro is that the child can not vomit, sometimes a so-called dumping disorder can occur, showing symptoms like sweating and collaps after meals. The J tube is also placed endocopically and normally give for a long lasting g enteral feed. Removing the G tube may be a severe problem and needs special attendance due to the tube itself, but mostly because of the underlying illness.

How does tube dependency develop?

The feeding tube, initially inserted as an intervention intended to temporarily help the child thrive under extreme conditions, is a device which helps initially but makes patients dependent. As a consequence, many who became dependent on their tube, never learn to eat and show distinct food refusal and avoidance patterns, leaving both child and family with traumatizing challenges and a significant financial burden.

What exactly is tube dependency?

Tube dependency is a distressing and unintended result of tube feeding in infancy. The condition of tube dependency can be defined as active refusal to eat and drink, lack of will to learn or the inability and lack of motivation to show any kind of precursors of eating development and eating and drinking skills after a period of enteral feeding. It is often characterized by overt disinterest, food avoidance and active refusal, gagging, vomiting, oversensitivity, fussiness and other oppositional and aversive behavior. It may influence the quality of life of the affected infants and their families to such a degree that all other troubles fade into oblivion besides the nightmare of a child who will not eat or drink and does not thrive even when enterally fed. Nevertheless, tube dependency is until now not recognized as a problem by many pediatricians. These children are referred to as children with feeding disorders/children with early eating behavior disorders.

What is the solution to tube dependency?

Tube weaning!

If the child can swallow its own saliva and can sip small amounts of water with no difficulty of choking, coughing or gagging, then there is a very good chance that tube weaning can succeed.

What is the best age for tube weaning?

As early as possible!
The development of normal eating behavior in the healthy child lasts from birth to 12-18 month. This is the natural time needed for the transition of the breast-, bottle-, or spoon-dependent infant to the self-feeding toddler. Most enteral tubes are given at the time of birth end their specific purpose and indication soon after.

Contraindications for tube weaning

There are some contraindications for the tube weaning program, which might need further investigation before a child can be weaned of the feeding tube:

• In cases of children after operations affecting the oral region like palate, pharynx or intestinal oral feeding might be prohibited for medical reasons, mostly only for a couple of days. Please ask your child’s physician if oral feeding would be allowed again and recommended from the pediatrician’s view.
• Children suffering from inborn disorders of metabolism requiring specific diets and regimes, which might taste badly when the child can not cope with this taste.
• Infants with severe difficulty in swallowing and/or being in danger of aspiration into the lung mostly suffering from recurrent pneumonia. In these cases frequent local pediatric surveillance is obligatory.

Please discuss and inquire about suitability of your child for our weaning program with us as well as with your physician. Furthermore, if any of these contraindications affect your child, please contact support@notube.at in order to discuss whether and which tube weaning program is appropiate.

So what do we exactly do?

NoTube is a tele-medical spin off counseling company steming from the Psychosomtaic Division of the Medical University of Graz, Austria. Our final goal is to reduce drastically the number of tube dependent children in the world.