How's it going? Have you managed to find any osteopaths to "meet and greet"? I am going to see one fellow tomorrow without Trav, and then I'll meet another osteopath Aug. 10. In the meantime, I have a call in to Jesse's endochrinologist (whom I believe in) to ask him whether I can pay him to do ACTH stim, renin and aldosterone tests, if I can't get a referral for them. Meantime, I've placed a call to our regular doctor (pri. care) to accept his referral to a neurologist, though I don't actually think we need to see a neurologist. I don't want to turn anything down, lest they feel this is a sign of lack of cooperation or trying to self diagnose, or they accuse us of not wanting to turn over all stones for a diagnosis. Today Travis slept until past 4:00 p.m., and didn 't eat anything until 7:00 p.m., when we all had dinner. When he first wakes up, he's not hungry, but I usually do better than THIS geting meals in!
How's Carmen feeling? How's the routine you are trying to employ? If she doesn't feel it's worth trying, maybe it would help to remind her that if she thinks she is capable of attending school this next semester, she might need to start getting up at the right time for it, and trying to train her sleepy body to comply. I'm sure she will have trouble, but it sounds like she needs to come to this conclusion on her own, so she can stop insisting that there's nothing wrong, and saying that you just WANT her to have some rare illness! I think that's what I'D do, if my child started making those remarks to me. I think I'd just back off a bit, and then let them break down and come to me for help and sympathy when they needed it. Perhaps if it was their idea to seek help, they wouldn't feel so much like everybody was doting over them, waiting for them to falter. I have a couple of kids who almost acted like your daughter when they were very young. When they hurt themselves, I'd go over and ooo and ahhh over them and ask them if they wanted to sit on my lap for a while, etc. At some ages (and in different circumstances), they'd reject this attention, and feel embarassed by it. They'd just want to be left alone, especially if they were driven to tears, and didn't want anybody to see them cry. It also reminds me of littler ones who are obviously very sleepy. When Dad and Mom remark about their sleepiness, they strongly object, saying they are NOT at ALL tired! There's almost a resentment in them for anyone noticing that they have any weaknesses. I don't really know whether this reminds you of how your daughter is reacting to all the attention being focused on her lately. Just some thoughts.
Hope you got an appointment lined up with a good osteopath! Good luck! ~ Tracy
Hi ya, The 'structure' the doctor wanted her to follow so far is a minor bust, well at least the sleeping part, she cant handle just 9 hrs of sleep, when she does get up after 9 hrs, by mid afternoon she falls asleep, she will sleep up to 6 hrs, if we try to bug her to keep her awake, she gets wicked, then ends up falling asleep anyway.
The doctor called with the antibody test results, I was told that they were going to look for any and all, well thats not what happened, all they looked for was mono, and you guessed it, it was neg.
I talked to her brother about what she said to me about me wanting her to be sick, and he said that she is probably scared that there might be something really bad wrong with her and it is her way of not being so scared.
The doctor asked how the 'structure' was going, I told her that the sleeping thing is not working, she said that hopefully by the time we go back in two weeks she will see a pattern....huh, how is she going to see a pattern, she didnt say to write anything down, and even when we did before she didnt even look at it. I asked the dr if Carmens 'female cycle' could be causing some of this, she said she didnt see how, and didnt see a pattern with that.
I am to the point of giving up for now, Im gunna wait till the appt. on aug 12, and tell the dr I want her to find a osteo for us, since she cant figure out what is going on maybe a diff doctor can. I know I sound mean but OH WELL.
At this point I'm not saying anything else to her, if she dosnt feel well, I'll wait till she comes to me with it. I did tell her one finale thing, IF when school is back in, and she has a problem, I'm not going to let it slide, she missed so much school last year that I'm shocked that she passed or wasnt called truant and sent to court, and that is NOT going to happen again this year. I'll let you know how things go.
Today is my "meet and greet" with one osteopath near our home. Gee would it be an added bonus if he were "the one". Only five minutes to the doctor's office! Super convenient. But that has not even been an issue. It was just an accident that we phoned a couple who were close to home this time. Your son is probably right about your daughter. He may understand how she would feel. Did your doctor also check her for CMV virus and EB (Ebstein Barr) already? They did that for Trav, and even felt it beneficial or necessary to REPEAT the EB virus test later, in case more antibodies had shown up by then. Thought that was at least thorough of them! Have they checked Carmen's potassium and/or sodium on any tests? I'm told that with Addison's the potassium is often high, and the sodium low. But Trav's have been right smack in the middle of the normal range.
As far as school, I may have told you how we finally handled it. First we tried transfering to him something called "e-school", which is a wonderful option for some children who are ill. There is no schedule to be followed as far as WHAT HOURS during the day they do their school work. Also, they can take lots of sleep or rest breaks, if they need them. There are video taped lectures; they give you books to read, and the child scans math and english work, for instance, and submits them over the net to each teacher. They can write to the teachers about questions, and their whole semester is laid out for them to be able to better budget their time; on their better days, they can tackle some work before it is due, etc. I wonder if this is available through YOUR district. I'm sure your daughter would probably miss the social aspect of school, but it may be the most viable solution for her until she is feeling better. Sad to say, even this did not work for Travis. We finally had to withdraw him and state that he would be home schooled. This type of schooling is REAL flexible. I worry more about his health and missing out on life in general. The other day his little brother said, "I wish Travis would get well again! He's not as fun as he used to be. He keeps getting tired too easily!". I know that school will be a drag to catch up on. He told me he was afraid of school the other day, because he was afraid he'd get too far behind. I reminded him that he has always been in the upper 90's on all acievement tests. I don't take education lightly, but it IS secondary to survival and health. I suggested (to ease his mind, not as an actual PLAN) that perhaps sometimes he could take the GED and graduate that way. I laughed and said, "Heck, you could probably learn some higher math and then take it right away and pass.". I don't want to make him think shool's not important, but there's no call to sit and worry about what we cannot change. Just like the old serenity prayer, "...and the wisdom to know the difference.". I will let you know how my apt. to meet this doctor goes today, and our next one Aug. 10 (with Trav). Between these, I'm hoping we'll get called in to do some tests by Jes' endo. Take care. ~ Tracy
Hi Tracy,
I saw that you mentioned paying the endo. out-of-pocket for the ACTH stim test and just thought it might help to know what you're getting into financially - we just got the bill for my son's most recent ACTH stim. test yesterday, so it is fresh in my mind! Fortunately, we have insurance to cover 80% of it, but even without the doctor's charges added on to it yet, the test itself (including pharmacy, lab, supplies, and treatment room charges), came to $1,717! I'm sure that if you're as desperate for answers as we were a year and a half ago though, then the cost is not even a factor. Good luck with the new osteo. Jill
Thank you very much. I hadn't gotten around to asking the price yet. And I WAS wondering, as we don't have much disposable income. That IS a consideration. I'm glad I read your message, and I'm also glad I read it AFTER talking to my younger son's endo, who WILL test for me. He urged me to get a referral, though! Gee, now I know why! Thanks for chiming in with that good piece of knowledge!! ~ Trace
For Craftlady 
Today Travis slept until past 4:00 p.m., and didn 't eat anything until 7:00 p.m., when we all had dinner. When he first wakes up, he's not hungry, but I usually do better than THIS geting meals in! 
If she doesn't feel it's worth trying, maybe it would help to remind her that if she thinks she is capable of attending school this next semester, she might need to start getting up at the right time for it, and trying to train her sleepy body to comply. I'm sure she will have trouble, but it sounds like she needs to come to this conclusion on her own, so she can stop insisting that there's nothing wrong, and saying that you just WANT her to have some rare illness! I think that's what I'D do, if my child started making those remarks to me. I think I'd just back off a bit, and then let them break down and come to me for help and sympathy when they needed it. Perhaps if it was their idea to seek help, they wouldn't feel so much like everybody was doting over them, waiting for them to falter. I have a couple of kids who almost acted like your daughter when they were very young. When they hurt themselves, I'd go over and ooo and ahhh over them and ask them if they wanted to sit on my lap for a while, etc. At some ages (and in different circumstances), they'd reject this attention, and feel embarassed by it. They'd just want to be left alone, especially if they were driven to tears, and didn't want anybody to see them cry. It also reminds me of littler ones who are obviously very sleepy. When Dad and Mom remark about their sleepiness, they strongly object, saying they are NOT at ALL tired! 
Good luck! ~ 
Tracy 
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