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?
I think I would have doctors make sure that his Nissen 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.
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