Do you have any questions?

Tube weaning is the professionally supported transition from tube feeding to fully oral nutrition.

Tube dependency is a situation in which a person continues to receive their nutrition via a feeding tube despite it no longer being medically necessary. The person is capable of and cleared for oral nutrition but does not manage sufficient caloric intake with oral nutrition alone. They often display the following symptoms: oral and tactile aversion, food refusal, absence of a hunger response, nausea, gagging, and vomiting.

ARFID (Avoidant and Restrictive Food Intake Disorder) is an eating disorder that accompanies reduced nutritional intake. Symptoms include weight loss / long-standing weight arrest, nutritional deficiency, tube dependence, and significant psychosocial limitations.

No. Eating problems are very common and occur at some stage of the developmental process in about 25% of healthy children. In children with developmental disorders and disabilities, they occur in about 80% of cases (Chatoor, 2009; Kerzner et al., 2015). However, an eating disorder can develop out of an eating problem, and this occurs in about 1% of all children. Therefore, timely consultation with professional help is essential when confronting eating problems!

It is important to differentiate between eating/feeding disorders of (early) childhood and those of adolescence or adulthood. Some examples of eating disorders in adolescence are anorexia nervosa, bulimia nervosa, and binge eating disorder. Examples of early childhood eating disorders are infantile anorexia, highly selective eating behaviour, or feeding disorders related to regulation disorders. 

What they both have in common is that the nutritional intake is pathological and professional help is necessary.

No. Failure to thrive is defined by a bodyweight below the established weight percentile for the child and can have varying severity (Koletzko et al., 2008). An eating disorder can be but is not necessarily the cause of failure to thrive! Failure to thrive can also have organic causes.

The most common eating disorders in adolescence are anorexia, bulimia, and binge eating disorder. They often persist into adulthood.

 

 

 

Anorexia Nervosa is characterized by a purposeful self-induced or sustained weight loss. It is accompanied by a body schema disorder. It often leads to absence of menstruation.

 

Bulimia involves binge eating followed by compensatory behaviour (usually vomiting, laxative use, excessive exercise…). People with bulimia ingest a large amount of food in a short time (binge eating), which can cause obesity.

 

Mixed eating problems (such as atypical anorexia, not otherwise specified…)

Children refuse food, it causes power struggles and problems in interactions, it can accompany failure to thrive (drop in growth percentile), usually begins between 9 and 18 months of age.

Selective eating behaviour with or without nutritional deficiency; most often includes sensory-tactile aversion; high comorbidity in children with a diagnosis of autism spectrum disorder, ADHD, and premature birth.

Unsettled feeding situation, high distractibility, low tolerance for stimulation, increased parental stress, most often in combination with a sleep disturbance and/or colic, frequently accompanies failure to thrive

Demands for excessive amounts of food lasting over one month, food is a dominant topic, pocketing of food (collecting food in cheeks), often (but not always) accompanied by higher weight

Eating disorder persists after abatement of the illness  (often experienced by children after oncological treatment, major surgical procedures, etc.), often experienced by children receiving enteral nutrition (tube dependency can occur)

Following a traumatic event (e.g. choking), children most often previously ate normally, can lead to regression in eating development (e.g. children who previously ate revert to only drinking) or to complete refusal, risk of dehydration

Compulsive eating of inedible substances or objects such as dirt, paint chips, etc. Assessment must take developmental age into account. Clinical picture often accompanies deficiencies (important medical clarification). Often comorbid in children with disorders on the autism spectrum.

Eating development does not correlate with general development (e.g. 3-year-old child who only drinks from a bottle), often with accompanying anxiety, resistance to change

Feeding with extreme distraction (e.g. only in front of the TV), dream feeding (child is only fed while asleep, parents’ sleep rhythm greatly altered), extreme pressure on parents. Attempts to alter the eating situation can lead to power struggles between the child and parents, resulting in hours to days of refusal to eat.

A situation in which a child continues to be tube-fed despite lack of continued medical indication for tube feeding. Transition to oral intake is unsuccessful. Typical symptoms are food refusal, gagging, vomiting, tactile and oral aversion, eating development delays, lack of appetite, interferes with social life of the entire family, tube-specific side effects such as tube blockages, redness, infection, etc.

Our experienced team has many thousands of successful tube-weans behind them. Every child undergoes a standardised diagnostic process where our experts will determine whether your child is suitable for this treatment approach. Through our interdisciplinary collaboration (every child in Netcoaching is attended by a paediatrician, a psychologist, and a specialized therapist), we ensure the highest level of safety for your child. We are available on a daily basis, including weekends and holidays.

As closely as parents and caregivers or your local medical professionals would like. If beneficial and workable on both sides, any medical providers can be given access to our online portal by receiving the login information from the child’s parents. This allows them to ask questions or contribute their own comments and suggestions and will only require 2-3 minutes of the physician’s or therapist’s time per entry. What is important to the NoTube team is that no medical provider who wishes to participate is coming from an overall objection to tube weaning in general and that – in the case of major scepticism or bias – these problems are cleared up after completion of the assessment and before commencement of the tube weaning process. It is important that the psychological burden of the parents during the tube weaning process not be compounded by conflicts of loyalty and the potential for misunderstanding and disagreements around opposing medical perspectives when these are avoidable. The NoTube team is always open and prepared to incorporate suggestions and treatments from your local providers as they have been deeply involved in your child’s prior medical care.

This is a frequently asked and very important question that is addressed before and during the assessment process. We will only grant a positive assessment of suitability if we believe the Netcoaching program can help your child learn to eat. Ups and downs in parent’s perceptions regarding their child’s improvement are normal, as is the ongoing identification of potential obstacles, and these must be discussed on a regular basis – respectfully, delicately and comprehensively. That is why our experts are there for you on a daily basis.

The likelihood that your child will not be capable of learning to eat, despite a positive outcome from the assessment and review of suitability for the program is minimal. However, unforeseen events can always occur, such as an illness or worsening of the medical situation, and we will find solutions to these on an individual basis. In most cases, tube weaning can and will be completed within 6 months, sometimes even faster. Every child is an individual and requires more or less time to be successfully – the Netcoaching program can give them this time, as there is no set time limit for completion. In rare cases, it is possible that a child’s degree of illness or disability does not allow for a transition from enteral to oral nutrition, because it simply requires too much time and energy or because the child has an illness where there are only short periods where they can sustain short periods without oral intake.  In these cases, it may be that a partial tube wean is the ultimate goal (e.g. allowing the child to eat and drink as much as possible during the day and receive supplementary tube feeds at night.

The length of Netcoaching is not predetermined. We support you and your child until 35 days after the last tube feed, under the condition that your child is in general good state of health and their weight is stabilized. It can take anywhere from a few days to several months before your child is ready to give up their tube feeds completely: Netcoaching gives your child that time. In the unlikely case that the weaning process cannot be completed within 6 months, we will review the situation together.

We consider a child who has achieved a stable weight and has maintained good general health while receiving nutrition fully orally for over one month to be successfully tube weaned. Having said this, we also understand that some parents prefer to continue with close support after this point. To meet this need, you can book our “Aftercare” ticket within a four-month period after the completion of the Netcoaching program and extend telemedical support on a month-to-month basis.

Videos can be easily uploaded to our platform directly from your smartphone or tablet. You can either film the video first and then log into the NoTube Netcoaching platform and upload the video, or you can do it the other way around. Both options work! If you prefer to upload a video from your camera or laptop, we will set up an upload button for you in your personal NoTube account.

During the first week of treatment, we will work closely with you to help your child reach their full potential. If during this time, you are unhappy with our work or feel we are not in a position to help your child, you can contact NoTube at any time via email at help@notube.com to cancel the program. We will offer you a complete refund of treatment fees.

Since we work with patients from countries all over the world, each with their own unique insurance system, there is not a single and comprehensive answer to this question. We are happy to support you in the process of submitting a request for reimbursement to your insurance company. If you would like to find out if your insurance plan has covered the Netcoaching program in the past, send us an email request at help@notube.com, and we will gladly search our data base relevant information.

Your child will be treated by a team of at least three experts: a paediatrician, a clinical psychologist, and a therapist from either physical or occupational therapy. Our team has collective experience with many thousand successful tube weans. Interdisciplinary collaboration is foundational to our process and comes naturally to us.

By participating in our Netcoaching program, you will avoid the high risk of hospital related infection and the potential for retraumatizing hospital stays in addition to saving travel costs. Your child can learn to eat in the comfort of their own home, and all members of your family can be active participants in the process. Moreover, your child can continue to attend their nursery or primary school as well as any other essential therapies. Our team is made up exclusively of experienced and highly specialized professionals in the field of tube weaning.

We are here to support you on a daily basis, including weekends and holidays. The combination of written communication and video conferencing offers a comprehensive approach to supporting your child. Your child can be at home, in the environment most familiar to them and to the whole family. We focus on the skills and abilities of the children and respect their quest for autonomy. Video analysis gives us the opportunity to observe a range of eating situations, offer suggestions, and work together with you to implement them.

No, the program will end automatically after the three months are over. But you are always welcome to extend it beyond that time.

Every child will be supported by one of our paediatricians along with one of our experts in the field of (early) childhood feeding and eating disorders. The members of the treatment team will remain the same for the duration of the process.

We will conduct video conferences with you and request that you send us videos of your child After our team analyses these videos, we will discuss our observations with you. This enables us to help you in modifying behavioural patterns to reach the ultimate goal.

At NoTube, we have helped more than 3,000 children with extremely complex medical histories. Our team has many years of experience in working with children, both on-site and through our telemedical programs. Feel free to send us an email at support@notube.com, and we would be happy to tell you whether we have worked with a child whose medical history was similar to your child’s and, if so, what the results were.

The most common problems (in no particular order) are:

Transition from breast/bottle to spoon feeding
Transition from purees to solid foods
Expanding their variety of foods
Requiring help after weight loss
Requiring/needing help with medically necessary weight gain

Every patient and their family will have a paediatrician, a clinical psychologist, and a physical therapist working with them. Our team has been working together for years and have extensive experience working with patients with Anorexia Nervosa.

The program starts off at three months, but you can extend it if you wish.

We will be in contact daily, even on weekends and holidays. Questions, concerns, worries, wishes… can be shared with us at any time and will be read and answered within 24 hours.

Every minor patient  (as well as adult patients if they choose) receives two separate “tickets:” one for the patient and one for the rest of the family (parents, caregivers, siblings…). This allows all participants to communicate directly with us. We can help to negotiate and analyse stressors related to the family interactions and work with you to modify the ways in which these play out in the future. Other phenomena, such as co-dependency may likewise surface and can be looked at and discussed. 

Yes. It is essential that you work with a local doctor who will be responsible for a weekly check-in (weight, other relevant vital signs, blood levels). We would also be happy to communicate with your local doctor.