A few months after her birth, Elsa from France got a nasogastric tube due to food refusal. Subsequently, a G-tube was implanted by surgical means. Elsa showed severe side-effects of tube feeding: massive oral aversion and frequent vomiting. Her distressed parents decided to participate in the tube weaning course in Mayenne with 4.5 years old Elsa. During the course, Elsa learned to eat orally again. In July 2013, her G-tube was removed!
From the parents
We are the parents of little Elsa, born on December 21st, 2008. At the age of 2 months, Elsa started to refuse drinking and was transferred to the hospital, where she stayed for almost 2 months. Several examinations were conducted. Because of her refusal to drink, she received a nasogastric tube. At the age of 10 months a PEG tube was surgically implanted and the dependence started…We were discharged from the hospital without any information on how to help Elsa to learn to eat again. Like all parents of tube fed children, we beared with the fact that she often pulled out the tube and we had to re-insert it. Furthermore, she suffered from nausea and vomited a lot. Elsa was tube fed three times a day and thrived appropriate to her growth percentile. Consistently, we asked the medical doctors for further assistance in Elsa’s transition from enteral to oral nutrition and if there is a centre available which could help us in this matter. They always answered: “We have to wait, till a light dawns on her…”
Then we came to Mayenne in May 2013: We met other families with similar stories and the NoTube team, which consists of two pediatricians, two psychologists, a physiotherapist, a music therapist and a psycho-social counselor, who also was the french interpreter. Everything was well prepared to get the child weaned off the tube. Step-by-step the tube intake was reduced until the tube wasn’t used anymore (of course the children were seen everyday by the Professors, who monitored the weight carefully). We started to reduce the tube feeds 3 days before we arrived. At the tube weaning course we participated in a play picnic three times a day. This is a therapeutic session where all children get the possibility to touch, hold and play with food to get familiar with it. The intensive tube weaning course lasted for two weeks. One week after the start, Elsa started to drink high-caloric fluids from a bottle and her weight developed well.
We completed the course and went home with a little girl, who was not tube fed anymore. Elsa’s PEG tube was removed on July 2nd, 2013. Since that time, Elsa drinks a high-caloric vanilla milk in the morning and afternoon. For lunch and dinner she drinks vegetables enriched with high-caloric milk. She drinks her bottle all by herself… and since she eats, her whole behavior has changed: she is more open to her surrounding, she walked for the first time in her life and we are very happy, that we don´t have to use the whole tube equipment anymore…Until today, no underlying medical diagnosis has been ruled out for Elsa…