Thank you Dr. Breault!

Yet another turn! I just got an email from Dr. Breaut, the Harvard pediatric endocrinologist who has agreed to follow along with and consult with the local endo on Faith's case... The email said that he and her local doctor had spoke at length this morning and that they have agreed to continue at the lower, first level of weaning, dose for three to six months then check things out to see if there has been any progress!!! I am so happy! I think he interprets things a bit differently and uses a wide variety of things to help make his determination, whereas doctors who are not as schooled in this weaning process only use the ACTH levels.  This awesome news!!!! YOU GO FEE!

Setback

Ok, so we got the test results after the first taper and it is not good. The local endo said that her ACTH was 200 and that she was not comfortable moving on with her taper or trying to wean her, but that we could try again in another year.  I am not happy with that.

So, being Tenacious J, as my husband calls me, I emailed Dr. Breault with the results.  He said it all depended on the context in which the bloodwork was drawn, which leads me to believe that all hope is not lost. She had not had any hydro since 330 the previous afternoon and I am sure that is why her ACTH was high.  So.... I am holding out hope that he says it is still okay to continue.... I am still waiting on a reply from him as to what he thinks. I just hope that he writes soon.  And that I can talk her dr. here into continuing if he wants to do so.

Am I being too pushy or stubborn? Wanting this too much for her? Am I putting her at risk? I am losing my mind trying to get this figured out.  Any advice from all the people who have "been there and done that"??