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G-tube Removal


My daughter had a Nissen-Fundoplication procedure done over 10 years ago. She currently eats and drinks by mouth. She does not use her G-tube. Is the Nissen still functional even though now she can burp? Can the G-tube be removed? Has this been done with other children with CdLS? What are the consequences?

Answer of our experts

Sure it can be removed. If it has been over 10 years then it is unlikely to close if you just take it out. Some surgeons will try that anyway and if it is still leaking after a couple of weeks they will close the stoma (usually a short outpatient surgery). I would talk to the surgeon who did the tube and Nissen or another general surgeon if they are not available and her gastroenterologist doctor. It shouldn't matter if the Nissen is intact or not if she is doing well

CP/TK 7-13-10

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Consider always gastro-oesophageal reflux disease (GORD) in any individual with CdLS owing to its frequency and wide variability in presentation, which includes challenging behaviour.
Modification of nutrition and proton pump inhibitors (PPI) are the first-line treatments of GORD. Anti-reflux medications need to be used to their maximum dosage. Surgical interventions for GORD should be limited to those individuals with CdLS in whom nutritional and medical treatments have been unsuccessful or airway safety is at risk.
If GORD symptoms persist, endoscopy should be strongly considered whilst an individual with CdLS is still in paediatric care.
Surveillance for Barrett’s Oesophagus needs to be discussed with and decided together with the family, balancing the potential gain in health and burden for the individual with CdLS.


Gastrointestinal Problems

Every new born suspected or proven to have CdLS should be carefully evaluated for signs and symptoms consistent with gastrointestinal malformations.

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