And It's About Time There Was Some Support For Cushing's!
Hi. I believe my almost 17 yr old (nov. 11) son has cyclical cushing's. I'm even sure it's pituitary. I know I sound pretty sure of myself, not being a dr., but I just "know".
mark was dxd with fibromyalgia the summer before he started middle-school. I knew the symptoms, I have it too. I thought that was the worst thing in the world, to have a child with chronic pain and fatigue. Boy, was I wrong.
when did the real nightmare begin?? He's had so many medical problems since birth, but this summer has been a nightmare of nightmares, and we still haven't woken up.
in april, 2003, when he got out of the shower, he told me he had something weird to show me. All over his abdomen were deep, dark, purplish-red, curvy stretch-marks. I had never seen anything like it. He said at first he thought the cat had scratched him, then, in a matter of a week's time, it had turned into this. My heart froze. He had been feeling so bad that school-year that he could barely attend, at that time, was not at all. Now, they are also all over his breasts and above, above and below his knees, front and back, and down the inside of his upper-arms. He also keeps gaining weight for no reason. He barely has an appetite. Some dr's blamed the striai on his sudden weight-gain. He had gained 30 lbs in a couple months. But, the striai came before the "big" weight-gain. Now he has gained a total of about 75 lbs. Our pcp had no idea what to make of this.
i posted this newest symptom of his on my fibro-internet-support group, and a woman there, posted and emailed me. She had just been dxd with cushing's. (Oh, she was also a r.N. Before she became disabled) she told me about it, and I looked it up, and my heart about stopped reading all the symptoms.
he has been extremely pale for years, with blotchy red checks. A few years ago, he started excessive sweating. At that time, it was worse during the night, now it is constant thru the day. He hates this worse than the pain and fatigue. he now is also constantly urinating.
i told our pcp about cushing's, either him or an endo on our insurance list ordered 2 blood tests. One to test blood cortisol, and one for acth. The cortisol showed normal, the acth high. I then pushed for more tests. An endo on our list ordered the dex-supression test. He took a 1 mg tab at 11 p.M., then had a blood test at 7:30 a.M. Again, another call "good news, mark doesn't have cushing's" it would be good news, if I knew it were true. Also, due to the results of the test, the endo refused to even see him. Then we went in to see our not too happy with us pcp. I had brought in an article about how the dex-supp test was highly unreliable. He walked in and asked "why are you here?" (duh) I smiled and was nice, & started to say "well, you know mark has all these symptoms of cush..." he interrupted me and said (actually yelled) "shut up about the cushing's. He doesn't have it. This endo said so and won't even see him!" I was already becoming an emotional mess at that time, and I started to cry, but I said that I had this article on how this test was unreliable, and i'd like to read him just one paragraph. He told me no!! Then I was pissed. I told him that I had paid for this office visit, and if I wanted to read him a paragraph I could! He replied that no, he was the dr. And I would listen to him!! So I told him I wanted him then to make a copy of the paper now, and put it in mark's file. When he came back in, his attitude was much different. (I ranted and raved while he was out, sure the whole place heard me) he asked what I would like to do next. I said, see an endo, so he picked another one on the list he would call, but added that if this other one wouldn't even see him, he didn't know if another one would, either. And after spotting my book titled "your medical rights", he even ended the visit with "I suppose with the severe striai, cushing's can't be entirely ruled out".
his office called the next day saying he had an appt w/another endo at the end of september. My heart broke for mark. It was only may, & he was suffering so, and was so depressed, and sick of the whole thing. So, in the meantime, I searched the internet for a dr. I found one, I think on this site, although I didn't read it very well, or I would of noticed that it said she had not seen him yet, just had an appt. But it was at a university, where we have been helped before, & where mark was dxd with his fm. (Not a place to go to, though, if you need aggressive (as in medication) pain-control. I emailed this pituitary dr, got a reply w/in an hour with a number to call to make an appt! I called and they could see him in july!! And stupid me cancelled the other endo appt. We made the 3 1/2 hr ride there, first saw a young guy, he was saying how some kids do just get stretch-marks from gaining weight, but when he saw mark's, I swear, I saw his eyes bulge. He said they were "very impressive" not to mark : ( he came back in with the 2 drs I had emailed to. Trouble right away. The vet (or, 'scuse me, dr.) first thing said "well, no wonder you feel like a zombie, with all these med's you're on for your fibro" I said something like, they were common med's for fm, and I took some of the same, or similar ones, and yet I didn't feel like he did" he glared at me, and ignored me, and went to mark. They were very interested in his "impressive striai" and he asked mark some questions. Some he answered, but he's had a terrible memory, and lots of confusion, so a couple times he would look at me to help answer. Deje vu. I was rudely told by the dr that he was talking to mark, not me!! I couldn't help it, I had my hopes up so much, the tears just started pouring out (no bawling, just silent tears) they didn't care. Hell, I didn't dare speak after that. But at least I got what I wanted, he ordered 3 24 hr urine tests, he said just to pick any three days, not consecutively, and another dex-supp test, same one, came back normal. They said to make an appt for 3 months (3 months!!!!) and that if the tests suggest cushing's, that he could help him. If not, then he could not. I was dumb-founded! I managed to speak. I said "surely, if not, you can refer us to someone" his reply was "i wouldn't know who" I have questions on things that may have influenced the urine tests.
mark's bedroom was in the basement at that time, (upstairs now) and there is no bathroom there. He's too weak to come up during the nite anyway to urinate, so he was used to using a "container" during the night. Well, I didn't know how important it was for it to get poured into the chemical container right away or not, so I slept on the couch, and would set my alarm for every couple hours. This was very hard for me w/my fibro. A couple of times, I even fell back to sleep, so who knows how long it was out. He filled over an entire jug that 24 hrs! I put them in a grocery bag on the floor of the passenger side of my small car. Omg, when I turned into the lab, the bag toppled over!!! I grabbed it upright, but enough had leaked out to soak the grocery bag and the floor mat of my car. Again, I was crying. I went in with the dripping bag and containers, not even thinking about the acid in it. I had read and read how important it was to get every drop. But they told me it was o-k. I also had to write his height and weight down, and I didn't know it. They said it was o-k to guess. I wish I had done the other 2 tests the next two nights, but I did them the end of the following week. These amounts were not even a full jug. The pcp we have now thinks that if that first test hadn't spilled, it may have showed something. I already had my copies of the test results for a while, so I finally emailed the drs. He wrote back that his test results do not suggest cushing's and so they could not help him at that address!!!!
i called their customer service person, called and faxed the chief of staff, told him how we had been treated, and how could he not even refer us to an endo at his own hospital. I demanded an appt w/one immediately. The chief of staff called me the thursday before labor day, and said we could see an endo at their "weight-clinic" the next day. My antennas went up at that word, and I said so. But he said we could see an endo, and otherwise it would be a 3 month wait for another appt. What a waste of time. the endo walked in with a "social worker" (due to his "depression") this dr barely examined him, and the questionnaire was all about weight, eating habits, etc... They had promised us tests, the big test we had him fast for was a prick in the finger to check for diabetes. They came back in and again said, "good news, he doesn't have diabetes, or cushing's" but they did know what the whole problem was. It was his fibro-meds!!!!! So, they were sending in a pediatrician to talk to us, they wanted to put him in a 3 day detox to take him off his meds!!!!! And, I swear to you, they didn't say anything about running further tests, that was the whole problem! I was furious. I had to get out of there. My husband was eating it up!!! And mark was so confused! I said I had to use the bathroom. When I got into the hall, I was acting almost as insane as I felt. I threw my purse on the floor, hit the wall a couple times, (no damage done, remember my fibro, lol) I got back to the room, and the pediatrician had joined them all. I sat down and just glared. I basically told them they were full of it. My husband wanted to do it. (He later admitted he knew it wasn't it, but just so badly wanted to believe it could be so simple) so we left not knowing what we would do. They said they would call us the next week. I got thru to my husband that was a terrible thing to do to a kid that was so sick, and besides, had chronic pain anyway.
i also contacted our former pain specialist dr, whom had taken a position with hospice, so wasn't seeing patients anymore. Well, I got a call a weeko r so later, asking if we were going to folow up with their plan. I told them we had not gone there about his fibro treatments, we were satisfied with it, and would seek help for his current condition elsewhere. A week later I got a call from social service child protection agency for neglect and abuse!!!!!!!!!!!!!!! They had reported us for having our minor child on an opioid!!!!! 2 days later we spent 3 hrs telling this b!T*$ about fibro. I felt like I had gone back 20 years. Then our pcp fired us, becuz we hadn't done what they wanted us to do. Thank god, my dad's dr. Listened to our whole story, believed us, and took us on. But now he has not followed up on promises of tests.
we now are waiting for the next endo appt, (the same one we cancelled for sept) which is dec. 23. Mark said if this dr is an a$$, he is giving up. Thanks for listening.
