Friday, June 01, 2012

son with severe chronic bone pain

By Melanie Tuesday, March 02, 2010

 My  20 year son has severe chronic bone pain. He has osteoporosis and has had multiple fractures.  We have also had bone biopsy with showed a mineralization defect(focal osteomalacia) and high turn bone turnover but which have not lead to a diagnosis.  His blood levels of calcium and vit D are normal as are all his labs.  He received a Pamidronate infusion in October 2004 and that is when the pain began prior to that he just had fractures. 

 

He was completely debilitated at that time as he is now.  Pain  slowly began to disappear over a 3 year period only to return in May 2009.  He is now unable to walk much and is on medical leave from college. He has started Forteo injections hopefully to remove the pain.

His alkaline Phosphate levels were normal before the Pamidronate infusion and are consistently below normal since.  His younger brother also has had the multiple fracture and bone biopsy and experienced pain after the Pamidronate infusion but his went away a few months later.   We have no family history of osteoporosis or fractures. They only recieved the one Pamidronate infustion and we have filled an FDA report for a severe reaction.

Right now, after 5 years his life is on hold and we are low on hope.

 

 

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By Melanie— Last Modified: 12/20/10, First Published: 03/02/10