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Chronic GI Pain


My son has esophagitis, gastritis, and poor motility of bowels. He no longer eats his soft diet because it causes so much pain that he becomes self-injurious. He had little improvement with a Nissen Fundoplication and G-tube. As he has gotten older, the GI problems have become more severe.

Answer of our experts

Does he still have esophagitis? Without more data the only suggestion I have is to put a pH probe in his stomach (beside the G-tube) and run it for 24 hours on his Prevacid. We have had a number of people with CdLS with remarkably poor acid control on what should be a correct dose of Prevacid. If the pH is low, I would give more frequent or larger doses of Prevacid until the pH showed he is neutral most of the time.

CP/ TK 7-13-10

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Pain and Behaviour

As pain can easily remain unrecognised in a child with CdLS, all care providers should be aware of the different manifestations and the possible sources of pain. Specific tools to assess pain are recommended.



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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