I've been putting off writing this but have been mulling it over in my mind for awhile.
I have suspected for several weeks that Jess' Cushing's is definitely back. I don't know when she first suspected but she never said anything to me until the day she asked to do a midnight serum. I'd just gotten orders from Andy a couple of days before. I wanted the kids to do some midnights. I've never figured out why they use midnights to diagnose but 8 a.m. draws to see if you have a cure. Makes no sense to me. Neither of the kids had done any 8 a.m. during diagnosis. I just knew that I would feel better after seeing midnight numbers.
We did the midnights for Justin & Jess both. Later I discovered that Justin had been taking some replacements so that skewed the results. He had bronchitis & I'd told him to take some replacements since he was feeling nauseous. I just meant for that day but never actually specified. He thought I meant until he was over it. I do know that when he told me he'd been taking it for a few days he also told me that it made his stretch marks come back. Not sure what to make of that. He was taking 5 mg twice a day. But even with replacements his midnight was only 2.6, I told him that he won't do any more until he's off his antibiotics and probably after his cold is gone also. He's not feeling the greatest but think the bronchitis is gone and now just has a cold. Guess we'll see where his numbers fall one of these days.
Jess' midnight came back at 21.3! Whoa. But at least it came back high enough that we don't have to wonder. We know - it's back. Even though I knew it was back it was a different experience seeing it in B&W when I picked up the lab report. I cried. I know I can handle it but I was really hoping that they each had a cure since Bill is still working on a diagnosis. But on the upside, it's back in time that Jess can make the trip to LA with Bill and I when he goes out for IPSS and adrenal sampling. I hope I can coordinate an appointment for her with Dr. Friedman and Bill's two tests. Better than a separate trip for each.
We came up with a plan today. When I get the results next week from her last two midnights she did last week I will fax them to Dr. F along with a short note. Think I will email it all too. In the note I will explain the recurrence of her symptoms, the fact that I had our PA order some midnights, and then I'm going to tell him that "I hope it's okay with you, that since she seemed to be in a high, I had her do some UFCs." I didn't want her doing any UFCs and having the results show up in his fax machine without being able to have first showed him some proof that she needed to be testing.
So that's the plan for the moment.
I set up an appointment for Nov. 5 (?) hoping that Bill's testing can be done the same week. Tomorrow he is having his physical and testing done that he needs for IPSS. I know how to go about setting that up. As for the Adrenal Venus Sampling, all I have is a contact name. Lynne (Dr. F's office) said that was all the info she had. I know it's at Cedars and IPSS is at UCLA Med Center. So I need to call them and find out how we go about this.
Now I just pray that Justin doesn't start showing signs of recurrence after we get back from LA. I've said that if we took all the money we've spent on medical travel this past year and a half, we could of had one heck of a vacation!
Now we wait till we get the results from last weeks testing.
I have suspected for several weeks that Jess' Cushing's is definitely back. I don't know when she first suspected but she never said anything to me until the day she asked to do a midnight serum. I'd just gotten orders from Andy a couple of days before. I wanted the kids to do some midnights. I've never figured out why they use midnights to diagnose but 8 a.m. draws to see if you have a cure. Makes no sense to me. Neither of the kids had done any 8 a.m. during diagnosis. I just knew that I would feel better after seeing midnight numbers.
We did the midnights for Justin & Jess both. Later I discovered that Justin had been taking some replacements so that skewed the results. He had bronchitis & I'd told him to take some replacements since he was feeling nauseous. I just meant for that day but never actually specified. He thought I meant until he was over it. I do know that when he told me he'd been taking it for a few days he also told me that it made his stretch marks come back. Not sure what to make of that. He was taking 5 mg twice a day. But even with replacements his midnight was only 2.6, I told him that he won't do any more until he's off his antibiotics and probably after his cold is gone also. He's not feeling the greatest but think the bronchitis is gone and now just has a cold. Guess we'll see where his numbers fall one of these days.
Jess' midnight came back at 21.3! Whoa. But at least it came back high enough that we don't have to wonder. We know - it's back. Even though I knew it was back it was a different experience seeing it in B&W when I picked up the lab report. I cried. I know I can handle it but I was really hoping that they each had a cure since Bill is still working on a diagnosis. But on the upside, it's back in time that Jess can make the trip to LA with Bill and I when he goes out for IPSS and adrenal sampling. I hope I can coordinate an appointment for her with Dr. Friedman and Bill's two tests. Better than a separate trip for each.
We came up with a plan today. When I get the results next week from her last two midnights she did last week I will fax them to Dr. F along with a short note. Think I will email it all too. In the note I will explain the recurrence of her symptoms, the fact that I had our PA order some midnights, and then I'm going to tell him that "I hope it's okay with you, that since she seemed to be in a high, I had her do some UFCs." I didn't want her doing any UFCs and having the results show up in his fax machine without being able to have first showed him some proof that she needed to be testing.
So that's the plan for the moment.
I set up an appointment for Nov. 5 (?) hoping that Bill's testing can be done the same week. Tomorrow he is having his physical and testing done that he needs for IPSS. I know how to go about setting that up. As for the Adrenal Venus Sampling, all I have is a contact name. Lynne (Dr. F's office) said that was all the info she had. I know it's at Cedars and IPSS is at UCLA Med Center. So I need to call them and find out how we go about this.
Now I just pray that Justin doesn't start showing signs of recurrence after we get back from LA. I've said that if we took all the money we've spent on medical travel this past year and a half, we could of had one heck of a vacation!
Now we wait till we get the results from last weeks testing.
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