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The NoTube Eating School takes place several times a year in different European countries (Austria, Germany, France, Netherlands). It is a two week on-site course and provides intensive feeding therapy and tube weaning. Our first Eating School was held in Mayenne (France) in April/May 2013 and since then we have had more than 80 children participate.

The first two-week Eating School of 2015 took place from the 8th to 21st of February in Gnas, a village located in the province of Styria in Austria.

Eight families from five different countries (Austria, Germany, Switzerland, Netherlands and Ireland) signed up for our Eating School in the beautiful region of East Styria. The families all had one week of telemedical pre-course coaching before travelling to join the NoTube team in Gnas. Seven children between the ages of one and five years arrived to be weaned off their feeding tubes (nasogastric tube, PEG tube and jejunostomy tube), one child had already been tube weaned during the Netcoaching program and took part in the Eating School to further improve their newly acquired eating skills. The children arrived with their parents, some with siblings and one family even brought their grandparents.

Eating School in Gnas - child tube - tube free

The Pediatric University Hospital of Graz was nearby to provide any emergency care if needed. This is the hospital where our model of tube weaning was developed and where it is still researched and evaluated, guaranteeing great care with a long history of expertise in all kinds of tube feeding. The course took place in the JUFA (a guesthouse designed for young people and families) in Gnas and was a perfect, child-friendly place for our little patients and families to learn to eat. All the families stayed in rooms in the guesthouse and could socialize during breaks and evenings, forming a wonderful support group and lasting friendships. The JUFA team provided an excellent service and responded very flexibly to the individual needs and wishes of our patients. The numerous recreational activities on offer (climbing wall, mini golf, billiards, tennis) and an indoor swimming pool provided plenty of chances for the children to work up an appetite and a chance for all the families to have fun and relax.The lovely Austrian winter landscape covered in fresh, crisp snow invited everyone to enjoy a walk and visit the coffee houses in the village center.

Eating School NoTube tube free - child tubeThe NoTube team consisted of five therapists and all the children had therapy sessions on a regular basis from speech therapists, physiotherapists and music therapists. The daily pediatric psychosomatic rounds helped guide the process of learning to eat. During these medical rounds the nutritional aspects were dealt with as well as treating and educating about tube dependency. This dependence on an auxiliary device was a significant obstacle for both parents and children to overcome. The parents had their own group sessions with psychological guidance in the afternoons. Here they could share their emotions, fears and wishes with the other parents. The children received individual sessions and were supported throughout the entire tube weaning process.

On Saturday we had a field trip where the families had a chance to test out their newly acquired skills by making an excursion in their own family groups. Afterwards the day was discussed and evaluated with the therapists, helping the families to plan for life when they returned to their familiar environment.

The Play Picnic sessions took place three times a day (in the morning, noon and evenings) and provided our little patients with the opportunity to interact, touch, smell and taste food in a chaotic and child-friendly environment. The Play Picnics are an essential part of the “Graz Model of Tube Weaning”. The child and their siblings, parents and therapists take part in the Play Picnics together. Small portions of child-friendly food are provided all over the room and the children can interact with the food in the way they want to. This way the children get familiar with food, reduce the anxiety they associate with food and increase their autonomy. Rule for the parents: Eat in order to be a role model!

Eating School in Gnas child tube - tube freeThanks to all these sessions, we succeeded in supporting all children in making great progress.

These two weeks were very intense for everyone involved. The amazing solidarity among the parents, as well as the support of the local team which was available day and night, formed a stable environment, not only for possible crises, worries and anxieties but also to share the successes, joys and bond with families in a similar situation. The siblings of our little patients were involved successfully in the therapy as “role models for eating” and they were very proud of their important role.

The time at the Eating School in Gnas passed by quickly, all the children were able to achieve great progress in developing their eating skills, some of them could even be completely weaned off their tube during these two weeks and continued to sustain themselves with sufficient oral eating! On the last day of the course, all children threw their tube weaning paraphernalia away in a symbolic gesture. At the end, we held a closing ceremony, where our little patients and their siblings were awarded with small presents for their great achievements. The NoTube team was especially happy about the lovely farewell dinner organized by the parents, where everyone looked back on the past two weeks in a joyful and relaxed atmosphere. On the next day, it was time to say goodbye to Gnas; all the families and the therapeutic team started their homebound journeys. After the on-site Eating School, each child continues to receive telemedical coaching via our specialized and safe ticket system in order to stabilize and further develop the skills acquired in the on-site phase of the program.

Sabine Marinschek