Thanks for the input....

at first glance i agree with you on the over/under suppression cycle. However, her endocrynologist has taken into accounts her hospital visits, when he does her bloodwork.

she started out on .25 mg of dex, blood work said "not enough". So he increased her dosage to .50, bloodwork said "too much", back to .25 still "too much" ...now she is on 1/2 of a .25 tab daily. He agrees that typically this should be undermedicating her, we are still waiting for the results of the bloodwork. my gut feeling is that from the way she has gained weight and her other symptoms that somehow her body is not metabolizing the dex as it should...maybe her body is kind of storing it in some way. She had her gall bladder removed over the summer, I don't know if that would have an effect on it or not.  she has a digestive dr. who also treats her for stomach problems resulting from 13 years of steroid use, and she is to go see him tomorrow. as of now I am trying to get the two dr.s together to try to find out exactly what is wrong with her. I have not felt this helpless since she was little, and we had to work so hard to get her stable initially. I just talked to her dr. again this morning and told him she appears very tired, and dark around her eyes, in addition to having the stomach problems and the headache. she has not been to school in a week. I am just desperate to try to find the problem. The endocrynologist did say that if her bloodwork did not come back good we will have to try a different med....there is no lower dose of dex, and she has already had the higher dose. She has not had a er visit since december so this bloodwork should be pretty accurate. does anyone know if there are alternative meds besides dex or cortef?