Ask the expert


GI Issues


An 8-year-old boy with CdLS had his G-tube removed in August of last year. He was admitted to the hospital for dehydration in February with symptoms of gagging and high temperature. He was hydrated but received no other treatment at that time. Now he is refusing liquids and showing symptoms of gagging, but no fever. Mother may seek hospital treatment again. Should she have his Nissen checked for loosening or are there other procedures indicated?

Answer of our experts

This may be reflux again - or possibly something else. He may need to have his Nissen checked again and perhaps be put on an empiric trial of medication. Most importantly he should be checked by his pediatric gastroenterologist to sort things out

CD/TK 7-13-10

Answer is checked and valid for
Find other pages that share the same topic as this page Reflux9 Reflux3 Reflux38



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.

Legal Disclaimer

Please take note that the Ask the Expert service is comprised of volunteer professionals in various areas of focus. Answers are not considered a medical, behavioral, or educational consultation. Ask the Expert is not a substitute for the care and attention your child’s personal physician, psychologist, educational consultant, or social worker can deliver.

Do you have a question you would like to ask?

Ask a Question

Do You urgently need help? Contact the CdLS Foundation USA, Our Staff!