Josie
Josie lives in Germany with her parents. Her medical history is quite complex, and because of this, she has been fed via a feeding tube since she was born. As a result of long-term tube feeding, Josie never learned to accept food orally. She frequently vomits and does exhibits displeasure when offered foods. Since Josie is medically stabile, her family decides to participate in Netcoaching during the summer of 2022. Within a couple of weeks, Josie manages to transition to fully oral nutritional intake. She is successfully weaned from her tube. She now expresses enjoyment when eating, and the stress around the topic of nutritional intake has been reduced.
Tell us about your experience with you child’s mealtime situation (with or without a feeding tube). What was it like before, during, and after treatment? How did you feel during the program? What was difficult; what was easy? What kind of changes did you notice in your child? Share what is important to you with other parents…:
We fed our little super-girl, Josie, via a PEG-tube for about 18 months. As a result of an underlying illness, our daughter had been treated on the intensive care unit for a long time. After seven months, they placed a PEG-tube since she was not gaining sufficient weight. Even though, depending on her condition, she could occasionally drink 140ml, the recommendation was to always follow up with tube feeds.
Eventually, Josie completely stopped drinking and was fully tube-fed for 17 months. She vomited 2-3 times. At night, she would be woken up by the tube feeding machine and vomit, and we would remake the bed. It was very difficult for the entire family. We did go on vacation to the ocean with the PEG-tube, but it of course required much more organization.
Josie was still gaining very little weight but developed better physically, so we began to discuss our wish to tube-wean with the university clinic in Bonn. Health insurance in Germany unfortunately only covers in-patient tube-weaning. And after such a long time in in-patient treatment and many traumas, with another small child at home, no energy, and having developed an aversion to in-patient stays, we came across NoTube.
Our physiotherapist had taken a course with Professor Duntiz-Scheer and was impressed. So we contacted NoTube and, with the support of our family, gave it a chance – a chance for our daughter. We had the feeling that she deserved to have the opportunity to experience sensations of hunger and autonomously explore the world of food. Josie will show us the way, we said to ourselves. We started the program and received a great deal of support, especially in the first weeks.
For us personally, it helped to have clear guidance, that is clear instructions as when and how much to tube-feed, how much weight-loss is acceptable, etc. What can I say? In 6-7 weeks, Josie was no longer tube-fed. She developed an enjoyment for eating, and her speech also suddenly developed tremendously! Of course, she didn’t display “normal” eating behaviors, but after four months, she is continuing to eat better and even normal portions. We have started getting her acclimated to nursery school and are noticing how much more confident she has become through this self-determined approach to eating.
We would recommend NoTube every time and hope that our health insurance in Germany will start to cover this family- and child-friendly therapy soon. And it is such a good feeling to have accomplished it at home. It gives us a self-confidence that an in-patient tube-wean would certainly not have provided. Moreover, Josie could engage much more in an experience like this with us and in her familiar surroundings.
Since I, myself, work in a child and adolescent psychotherapeutic field, I will advocate in Germany for this therapy and recommend NoTube.
Kind regards and heartfelt thanks from Josie “Super-girl” & family!
