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Gastroparesis is a severely debilitating disorder of the digestive system that can have a huge impact on the life and health of sufferers. Translated as ‘partial stomach paralysis’, gastroparesis results in food laying undigested in the stomach for many hours or even days, often resulting in vomiting. This is caused by a dysfunction in the autonomous nerve system, primarily the vagus nerve.
The vagus nerve and the innervated muscles of the stomach make the constant smooth flow of food through the digestive system possible. This dysfunction can be a result from diseases, such as diabetes or Parkinson’s, as well as from nerve damage caused by surgery, injury or of unknown origin. Common causes for gastroparesis are eating disorders as bulimia and anorexia nervosa, when they affect the electrolyte balance or produce gastric dysfunction by self-induced vomiting.
Although thankfully rare, gastroparesis can occur in children and newborn babies. In these cases, it is mostly a result of a genetic disorder or a birth defect such as diaphragmatic hernia. It might be a serious issue. Food is not properly digested, the child may be malnourished, resulting in slow development and even weight loss. It is in these cases where an adjusted diet fails to improve symptoms that insertion of a feeding tube may be the only solution.
Due to the dysfunction of the stomach this tube must bypass the upper part of the digestive system and provide nutrition directly into the small intestine, using a jejunal feeding tube. This can be achieved either directly through the gut wall, or, more commonly at first, through the nose. Although this can be distressing for children and babies, they generally become used to the procedure.
This procedure does not heal the problem itself but makes survival of the baby possible.
Due to the nature of the disease, gastroparesis presents a major problem when parents try to wean the child from tube feeding. Weaning should only be tried in cooperation with a medical team. The aim would be to establish normal eating habits. A custom diet can be devised for the patient, and sometimes medication is used. At NoTube, we have seen that some children with gastroparesis improved with tube feeding but became tube dependent due to the fact that they had been fed by tube for such a long time. Thus, fighting the tube dependency of parents and children is our task. We aim to help the children to gain confidence and learn to eat. We want parents to see progress and feel proud of their children.
Our approach is to test how much the child can eat and digest. Secondly we look into the diet and assess whether it is sufficient. Thirdly, we seek help from local doctors in order to find out if the child is able to digest and if so, what. To reassure parents who might have learned that their child is only thriving when being fed enterally might be necessary.
In the end the idea of “gastroparesis” is still scientifically under discussion.
In any case when a child is diagnosed with it, tube weaning might be an option. Please consider the diagnostic evaluation of the local medical team and get in touch with us. Our very thorough assessment might lead to a helpful coaching delivered by NoTube.