re: re: Adrenalectomy
Feb. 9th, 2006   5:18pm
Thanks, Danny. I’ve only been on this site a short while and wasn’t able to find any discussions about adrenalectomies. I have chosen alternative methods for the past three years and even considered possible future treatments, but in the meantime, my daughter is getting worse. I don’t want her to have to worry about alternatives once she’s an adult. They do grow so fast. She is 15 now and capable of making an informed decision. We have just done genetic testing to show that she has the null mutation, which means her adrenals don’t work at all. They aren’t putting out anything and she is completely dependent on her meds. Besides her cortef and florinef, the other drugs she’s taking for androgen suppression are for cancer treatment. I’m uncomfortable with her taking them long-term and I don’t think all those drugs are good for her system. The amount of meds she’s taking on a daily basis make her nauseous. I am still looking into other alternatives before we make a decision, but this is what she wants and where we’re heaing. Her doctor is very experienced and capable, and I trust him. He says that if he had a daughter with uncontrolled CAH like mine, this is what he would do. That’s very important to me for him to say that. He has even referred us to other doctors for opinions. I just want to talk to somebody who’s had it done. I do appreciate all the input and support I’ve received from this website. Has anybody been given better alternatives?
Marcia
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