Hi, Janice! :bouncing:

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. :yawn: 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! :nono:

How's Carmen feeling? How's the routine you are trying to employ? :confused: 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! :yawn: 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! :angel: Good luck! ~ :wave: 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.

Hi!

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. ~ :wave: 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!! ~ :wave: Trace

Hey :wave: Home schooling is out of the question :nono: because of where we live (middle of nowhere) the interaction with other kids is very important. I'm not sure exactly what all they have tested Carmen for, the doctor keeps telling me that her potassium and sodium are normal, sugar level are ok, a antibody test (I was told to look for any and all antibodys) was only to look for mono which was neg., she has had so may blood and urine test, all they ever told us was that they were all normal. I'm going to see if I can get copies of the tests and results so I can post them here.
How did your "meet and greet" go? Good I hope. Let us know.

Hi!

The meet and greet appointment was so-so. I didn't get the feeling this doctor would use much initiative or creative thinking, or necessarily stick by us to ultimately arrive at a diagnosis. I think it would be interesting to see Carmen's thyroid "scores", if they've measure those, TSH, Free T4 and Free T3 and T4 and T3. Maybe you don't have those at your disposal. These are something I'm watching on Trav, too. His TSH has been on the rise, and is still within the normal range, but needs watching and discussing with another doctor or two.

Talked to my younger son's endo yesterday about doing the ACTH and renin and aldosterone tests for us. I wanted to drive out and give him a hug after our conversation! He was so great. He didn't belittle my suspicions, and he said I was entitled to a second opinion, if I wasn't pleased with the first endo's assessment. Said to ask my doctor for a referral to HIM, and he'd do the tests! He's a pretty neat guy. Is a pediatric endo, and says he has diagnosed one patient with Addison's and has another one who was referred to him for care of Addison's. Told me it's pretty rare, but didn't sound as if he was saying it to suggest that I was crazy to suspect it, you know? So I phoned my primary care doctor today to ask for a referral to him for his assessment and to have the tests done! Now, we may be getting somewhere. Will keep you posted. Hope the doctor doesn't say he won't refer us. I've now heard from another member here that the ACTH stim test is very expensive to have done! No wonder they don't want to do it.

So I wasn't sure exactly what you meant about school. You were saying that you'd force more medical exploration and quick, if she can't go, or that you'd feel you needed to become more strict about her attending? Wasn't sure there. I know there's no way Travis can go to school. He wants to, but couldn't. I'm sure it would do what it did to your daughter when she tried to go last year. He might be able to make it the first day, but then his condition would be ten times worse for several days thereafter. It seems that any type of exertion sets him back for four to five days or more afterward. Maybe I'd better send him off to school or to a friends overnight just before the ACTH stim test !!! ;o) That way it'll look its worst!
Take care, stay cool, :cool: and stay in touch. I think our sanity depends upon having others who are in the same boat to "bounce" :bouncing: things off of !! ~ :wave: Tracy

Hi, I did find a ped. osteo, now Im just waiting for them to call me back, wish I didnt have to wait till Monday.
After reading what TAEmom said, Im wondering if this has been more of a problem for longer than i thought, Im going to ask the doctor to look back in Carmens records to see if anything looks funny to them, she also wasnt a good eater, gained weight slow as a little kid, always had a tummy ache...
I'll have to see what they say. Hopefully the reason they didnt call me back is because they were looking over her file like I asked them to.
Take care.
Janice

Janice,

I just pray that this will be THE doctor to uncover your diagnosis! Hoping they will call you back on Monday. Will let you know, also, how our appointment with a new endo goes on Tuesday, and whether our doctor calls back about giving us the referral to Jesse's endo (our primary is out of town until Monday). I guess we all are waiting for Monday! I think Trav is beginning to feel real concerned about his schooling. He made a quavery remark last night about how his age wouldn't stay the same. In other words, he's worried about graduating from high school when he's 22! Poor guy; I wish I could "light a fire" under these doctors who feel they want us to wait around to see if he gets better or do one test at a time, afraid to spend too much money! Talk to you soon. ~ :wave: Tracy