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My daughter has severe gastroesophageal reflux (GERD). This has always been associated with bile being returned via the decompression tube or coming out of the nose and or mouth during severe reflux episodes. She is still showing signs of discomfort but even when there are no visible signs of reflux you can get anywhere from 1 to 25 ccÕs of dark yellow to green bile returned from her tube. This can cause her to lose part of her feeding in which I sometimes have to dump that part and start again. Both the pediatric gastroenterologists and pediatricians do not seem to be overly concerned by this. She has had a small bowel follow thru and an endoscopy done. We just cannot get anyone to understand how much this affects her life.

Answer of our experts

Some patients who have GJ tubes in place for reflux have bile because the tube is crossing over into the small intestine and allowing bile to come back into the stomach

If the upper GI/ small bowel follow through is normal, I would consider obtaining a gastric emptying scan. Perhaps a medicine to help the stomach empty (a prokinetic such as Reglan or erythromycin) would stop the bile from flowing backwards into the stomach. I would also consider adding Carafate, which can help with bile reflux

KL/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.

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