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Parent of teenage salt wasting cah girl whose condition was well controlled until teen years - we are on second endo now - he is telling us our daughters flutuating levels "can only be caused by not taking her meds as directed" - we are 100% convinced this is not the case - he claims that when he has seen this before the patients have told him later that they hadn't been taking their meds properly -we are frustrated, angry and disgusted with the medical profession - it seems as though they have a set plan to treat cah patients and if it doesn't work it must be the patients fault - switches from hydro to dex were tried with terrible side effects and then back to hydro - improvement seen short term with higher doses then levels back up again - parents forced to watch the pills being taken for three months with a promise to drop the noncompliance issue, no substantial change, but now again endo is again blaming noncompliance as the problem - again I must say we are 100% sure this is not the case, our daughter has independently(with sidline monitoring by us) taken her pills as set up in weekly pill minders by us since early childhood - Has anyone else out there experienced this? Advice, support, ideas or anything you have to offer would be appreciated.
