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PEG yes or no?

Question
Our daughter, 8 years old, is 121cm tall and weighs 20kg. She has a lung function of 80 - Aspergillus could be detected during bronchoscopy. Since October 2015 she did not gain weight, in spite of the fact that she is eating. We had already nutritional advice. She refuses additional food supplements. Our CF center recommends a PEG (percutaneous endoscopic gastrostomy). What should we do and is it really already necessary?
Many thanks for your help.
Answer
Hello,
you report that your 8-year-old daughter has a weight of 20kg with a height of 121cm. Her lung function is around 80% of the age norm and during bronchscopy an infection with Aspergillus could be detected. Your daughter did not gain weight since October 2015, in spite of eating. As your daughter refuses additional food supplements, your CF center recommended a PEG. You want to know, if a PEG is really already necessary.
In order to be able to answer your question comprehensively, one needs information about the development of weight and growth of your daughter for the last years. Furthermore it is important to knwo, which diagnostics had been made and which nutritional measures have already been undertaken. In general it can be said about height and weight, that your daughter is at the moment at the lowest normal level of children of her age (for both values in the region of the 3rd age percentile). With a lung function in the area of 80% of the age norm, it is relatively uncommon, that she does not gain weight. In such a situation this is often the consequence of the pulmonal situation.
For a judgment, it would be important to know, if the development of weight and height are already for a longer time period in this area, or if e.g. the curve for weight has left a former better area, i.e. there had been a clear negative development.
If one looks at weight and height in the frame of a height-weight-interaction, your daughter is slim, however not underweight. Beneath the fact of the stop of weight gain, the development of the weight over time is important.
It is important to know, which calory intake your daughter has per day. Furthermore it should be clarified, if the therapy with pancreatic enzymes is correct. Has e.g. a 3 times over 24 hours dieatry protocol with accompnaying enzyme substitution and fat excretion in the stolo be performed? In case the calory intake per day should be sufficient and the enzymde dosage is right, other causes for the lack of weight gain should be excluded (e.g. celiac disease, a beginning diabetes etc.).
If the calory intake is insufficient, it has to be clarified, if the calory deficit can be covered via enrichment of the normal food. Here it is important to develop many ideas with the dietician and to keep the fun for well-tasting food. Only if these factors are clarified, one has to think about a PEG.
If the insufficient weight gain developed e.g. due to constraints that led to a misbehaviour of eating or an eating disorder, it can be very helpful, to bring normality back for eating via a PEG. Via the calory intake at night, again relaxed and happy common meals with the family can be achieved. A once installed PEG does not mean, that it is needed forever. Often it can be removed after a successfull intervention of the crisis.
We wish you and your daughter much luck for the future.
Best regards,
Dr. H.-G. Posselt
07.10.2016