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Addison's Disease Message Board


Addison's Disease Board Index


Hi, :bouncing: Janice,
You were the topic of conversation between my mother and I yesterday, and while we spoke and I told her about your doctor's "orders" to have your daughter follow a regular routine, I remarked, "I'll bet she's going to find it VERY hard to get her daughter up!". Whether it's CFS, thyroid or adrenal issues we're dealing with, it sounds as if we're dealing with the SAME issues. Travis once couldn't get to sleep ALL night! I was so worried about him the next day, yet thought, "Ah ha! Maybe NOW we'll get him back to regular sleep habits. We can ask him to stay up all day, but go to bed no later than 10:00!". I told him my hopes, but about 3:00 p.m. he retired to his room and fell asleep, big clunky skater shoes and all! I tried to wake him about 5:00, thinking maybe the nap wouldn't ruin my plan. He would not be awakened. He slept all afternoon and evening, and wouldn't even get up at a decent time the next day. So all "routine" was lost. The doctors believe that our kids' funny sleep patterns are messing up their Circadian (sp?) rhythms, thus [I]causing[/I] their fatigue, etc. But they are no doubt putting the horse before the cart. Their illnesses are causing the strange sleep patterns! We can try causing a routine, but I'm afraid we will both find out again and again that it is not capable of existing until treatment is given, just as it is not possible to "just force them to attend school", as some of my friends have suggested I will have to do with Trav. It is just not possible for them to attend school, as we have both seen. Last semester I withdrew him (so I could rid us of the pressure of calling in each morning and TRYING to attend). I just told the school he'd be home schooled, which he will, as much as his illness will allow. I keep telling Trav that I wish he was on a schedule more like ours, so we could interract with him a bit more, and we wouldn't have to leave him up alone in the wee hours of the night. I explained to him that with school approaching, I'm going to HAVE to get up at 6:00 a.m. to get the other kids on their way. If I continue to stay up late to spend some time with HIM, I might soon be the next victim of illness! :o) I told him I'd like to slowly try to ease him back to regular hours -- awaken him at 1:30 for three days, then 12:30 for another three days, then 11:00, and so on, until he awakens at 10:00 a.m. or so most of the time. Then maybe he will start to feel sleepy earlier and earlier. Travis doesn't sleep 15 hours anymore. He just sleeps weird hours (from 3:00 a.m., when he can finally fall asleep, to 3-4:00 p.m.!).
I hope you [I]can[/I] get a "meet and greet" appointment (OR two, if needed, to find a GOOD osteopath). I have one scheduled for 11:45 on Tuesday with another osteopath. Not taking Trav. Hope they will let you do that, too. I'm just going to tell him I would like him to have adrenal issues ruled out, especially, using and ACTH stim test, aldosterone and renin levels. I'll see what he says to that, then ask some more questions about whether he treats patients based on their symptoms as well as their labs for thyroid issues. I'm sorry I don't remember, has your daughter had her thyroid tested already? Travis has, and he falls in the normal range, but has a steadily increasing TSH. I wonder whether trying meds for hypothyroid might help him. His body temp when he awakens seems very low, too. Chris and some others think this is a sign of thyroid issues. Not all doctors accept this idea. I'll tell you one thing. My blood pressure has always been about 108/64 most of my life. I often would give blood, but was right at the bottom level of what you could weigh to do it (110 lbs.). I was once called to L.A. to give blood for a man who was going to have heart surgery, because I have B- blood, and it is fairly rare. I drove up to L.A. the next morning, but when they were taking my blood, all of a sudden the nurse starting getting real excited. She looked frantic, and was elevating my feet and head and putting a blanket over me. I knew about shock, being a recent graduate of EMT-I (emergency med) training. I felt fine, but VERY relaxed and sleepy. After the hustle and bustle, she told me my blood pressure had fallen to 60/40, and they struck my name from the donor records and told me never to come back again! Rather dramatic, but I got the idea. My point for YOU is, your daughter's BP is from time to time near this dangerous level! Doctors should be [B]worried[/B] about this. That nurse sure was, with me on the table, though there was an obvious CAUSE of my lowered blood pressure. I'm sure she wished she could have put my blood back in! Be sure to mention these LOW BP's to any doctor you interview. If they don't raise on eyebrow, they're not good doctors!! I say this with no hesitation or apology, no if's or buts. Your daughter's emergency room BP's have been good warnings of a condition that needs paying attention to!! That nurse minced no words to me when she said they almost "lost" me over a blood donation. She was furious (scared, probably, but it almost seemed as though she was angry with ME and thought I should have KNOWN better than to donate)! I probabaly know how your daughter feels when she feels faint. Usually after the blood donations I'd done before this particularly bad one, I would feel almost faint or dizzy about 30 min. after giving the blood. My BP was probably doing what your daughters does.
We'll just have to keep in touch. Best wishes, and sorry for the long post. ~ :wave: Tracy





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