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Bone Pain


Our 8-year-old is complaining that his "bones hurt." His physician thinks it may be "growing pains." Additionally, he has frequent pneumonia, stridor, recurring fevers, and a G-tube. He periodically complains that his stomach hurts after eating and this is immediately followed by diarrhea. Have you come across complaints of bone pain before in children with CdLS? If so how can I best seek medical treatment?

Answer of our experts

I think I would have doctors make sure that his Nissan fundoplication is still working, if he has one. It sounds like he's having reflux. It is possible that some of his "bone pain" could be GI pain. Regarding the bone pain, I have not come across this with CdLS but many of the children might not be able to verbalize this. There are such things as growing pains, but usually you rule out everything else first. Make sure there's nothing swollen, hot or red in his joints.

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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