Lori starts Netcoaching for tube weaning at over a year old. Despite medical complexity, chemotherapy, and repeated hospital stays, she successfully transitions from complete tube feeding to independent oral feeding with a significantly improved quality of life.
Lori is a little over one-year-old when she starts Netcoaching. Because of her medically complex situation, she’s been fed for over a year via a nasogastric feeding tube. Her parents sign her up for Netcoaching in December of 2022. She initially displays a strong oral aversion and vomits frequently. She does not accept any foods orally. Because of her underlying illness, she has several hospital stays during the course of her treatment. She receives chemotherapy, which has an effect on her appetite. Despite these challenges and the breaks in Netcoaching, she manages to increase the amount of food she receives orally so significantly that she feeds herself fully orally today. Lori’s quality of life has improved.
Tell us about your experiences with the eating or feeding situation of your child (with or without a tube) before, during and after the treatment. How did you feel during the program? What was difficult, what was easy? What kind of changes did you notice in your child? Please share with other parents what you care about most ...:
Hello at the beginning of the tube-wean, our daughter completely refused any food or drink. A small globule (e.g. Arnica) would cause gagging, never mind food.
Tube-weaning is a long and difficult process, but it’s worth it. For our daughter, Netcoaching from NoTube was absolutely the right choice. Her many hospital stays and chemotherapy had significantly weakened her immune system, and she was often ill during her weaning. The weaning was tailored to our daughter’s individual needs. Time and time again, her nutritional/feeding plan was adjusted to fit the specific situation in which we found ourselves. Even our daughter’s personal preferences were taken into consideration, for instance, even to this day, she refuses any foods that are pureed.
Through the “internal chat system,” we usually had a response within a few hours, even at night. During the day, it was often within an hour. I always felt well-advised and supported, and when there was a problem, help was provided. The paediatricians often gave me advice beyond tube-weaning.
The goal of the tube-weaning is that the children enjoy food and want to eat. In our case, this worked. Of course, even now (without the feeding tube), a certain amount of persuasion is necessary at meals. But she eats, and she willingly asks for food and especially drinks.
Maintaining and gaining weight is still difficult, but we are doing it. And for this, too, we received tips specific to our daughter’s needs. It has been 30 days since the nasogastric tube was removed and, with the help of NoTube, we got through the cold season. I am glad that we chose this option and very grateful that the amazing team supported us so well in every situation we encountered. There were points at which I thought that we would never succeed… but the team encouraged us with the right support to keep going… and with success :-)
I am infinitely grateful to NoTube. Our daughter’s quality of life has improved tremendously.