Guest guest Posted August 28, 2004 Report Share Posted August 28, 2004 Jane: Number one, how is ? I think about him often and worry about how much pain he is in. What are they saying about his hip?? Rob was initially found to have low IGF-1. This is sort of a screening test to see how much growth hormone they secrete. If it is low, they move on to a stimulation test. This involves getting an IV line and being given a drug to stimulate the body's production of growth hormone. The IV line is so they can draw blood every half hour for about 2 hours. Rob actually passed this test, but it was felt that he could produce hormone to stimulus, but didn't produce it on his own. That and the fact that he wasn't even on the growth chart for a boy his age, led the doctors to try the growth hormone. He also had osteopenia, or thinning of his bones. They felt that this was caused by the lack of growth and the arthritis. In April 2003 Rob was 4'10 " and weighed 78 lbs. Today he measured 5'5-1/4 " and weighed 117 lbs. So, that is 7-1/4 " and 39 lbs of growth and weight in 16 months. Quite amazing! After only 6 months of growth hormone therapy, with the spectacular growth he had, his bone density came back NORMAL!! I hope that this helps. If you have any more questions please don't hesitate to ask, ok? Let us know how is doing. and Rob 15 Spondy On Sat, 28 Aug 2004 10:59:58 EDT Jitz45@... writes: Hi this is Jane mother to a (age 13 systemic )I spoke to our rheumy yesterday and I told him about the great results your son Rob had with growth hormone. I think if I am correct you said he went from 4ft9 to 5 5 in 15 months..is that correct ? He seemed more interested this time and set us up with an endocronologist to see at the end of the month.if you could just remind me again of the age Rob was when he started and some of the details I would appreciate it. thanks so much Jane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2005 Report Share Posted September 15, 2005 thank you so much!!! Beatles* with a little help from my friends...that song...hope to hear it without reading it along good advise. *HEY* AUDI!!! ) > > In a message dated 9/14/2005 1:37:30 P.M. Pacific Daylight Time, > me_jane_mary@y... writes: > > Four months? well, if anything, that is good news!!! )) I feel > more reassured (but still need a hug). (cowering w/ embarrassment) > > > > Trust us! Even at 4 months, 5 years, or even 20 years we all are improving > every day! > > Your last few posts tells me that you are looking up! It made my day! > > now,,, go back a bit further,, to your reply to me.... let me go find it,, > oh yes,, there it is,,, > > First of all, you are not doing anything wrong, I too complained that my CI > sounds NOTHING like I thought it would compare with hearing aid! All of > what you hear now, will soon be " tuned off " as you somehow learn to ignore those > A/C and other background noises. I never believe in " work hard " , as I find > it is easier to learn as I go, and whatever will sneak up on you when you did > not expect it > > You said you had speech therapy all your life,,, so did I.. sort of,, 15 > years of formal therapies in schools from the time I was three then follow up > with bunch of idiots who trying their best to correct me (families and > friends). I am a strong believer that using what we know through therapies, it makes > it easier to help us as we learn to hear. > > I need to know, how many mapping have you had so far in past 2 weeks? Did > you know your audie is hired to be your punching bag? If you don't like what > you hear, tell them and they will see what they can do to help you. > > In my early days, I complained about high pitches, my audie turned it off, > then gradually increase the high pitches until I get used to it. Even though > I could handle it during T/C test, being out there, hearing it 24/7 was too > much, so gradual introduction of high pitches worked best for me. > > Think of all your gripes, and tell your audie what YOU want to try. They > are more likely to bow to your order. > > Good luck! > Lee > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2006 Report Share Posted February 17, 2006 At 08:32 AM 2/17/06 +0000, you wrote: >OK - I understand why 800mg - I was put on Hydroxy Urea first to get >the wbc down. Got my results yesterday after my first blood test on >Gleevec - to quote my doctor " everything is normal " . What the hell >does that mean? I keep asking her for the numbers but she is not >keen to tell me. Gonna give her 1 more chance and then I am going >Oncologist shopping! Hi Jane, No, people are not put on 800mg of Gleevec because their blood counts are higher....the standard dose for chronic phase CML is 400mg but there are places that are doing trials to see if starting on the higher dose will give a quicker response to the drug. If you are accelerated, they will usually start you on 600mg. I know you don't live in the US, but most folks can get a copy of their blood test results, which is what you should ask for (and keep your own records). Everything is normal in the standard blood test is a start but it really does not mean much in CML. Usually people on Gleevec have their blood counts stabilized (or normal) within 3 to 6 weeks or so.....and this is called a hematological response (some use the work remission but not really appropriate). So, on the drug you now have a normal white blood count (which would be elevated in untreated CML) and normal platelets (which might also be high with CML).....but if this doctor doesn't even want to share your blood counts with you, I would definitely shop for a new hem/onc. And when you interview others, let them know from the start that you want/intend to be a pro-active and involved patient. To my mind, a doctor who doesn't want to share information, just wants to be in charge and not have you involved in decisions....not appropriate with a chronic illness. C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2008 Report Share Posted March 16, 2008 Fascinating. I wonder if anyone's studied blood levels during a course of oral vit. D supplementation? dave Ellen wrote: > > Hi Jane, > Be careful with supplements. Please check out this recent research on > vitamin D supplements: > This scientific study shows the downside of taking vitamin D supplements. > http://www.sciencedaily.com/releases/2008/01/080125223302.htm > <http://www.sciencedaily.com/releases/2008/01/080125223302.htm> > Ellen > jane@... <mailto:jane%40pipeline.com> wrote: > > > Thanks, Ellen. That makes sense. > > > > One thing I thought about after reading the article - if the > > deficiency of Vitamin D is from lack of sun exposure, supplements > > might help. The article was discussing deficiency of Vitamin D from > > disease, rather than from lack of sun. So in the instances where the > > deficiency is from lack of sun, supplements might not make the > > disease process worsen, and might be helpful, whereas if it is from > > disease, the supplements would be problematic. > > > > Jane > > > > On Mar 9, 2008, at 5:18 PM, Ellen wrote: > > > > > You need to use the sun judiciously. No sunburns. That means if you > > > know > > > you're going to be out in the sun at midday for more than 20 > > > minutes, then > > > definitely use sunscreen. Sunblocks definitely stop the creation of > > > vitamin > > > D in your body. Look up on amazon.com the book " The UV Advantage, " > > > by Dr. > > > Horlick. > > > Ellen > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2008 Report Share Posted March 16, 2008 All I can tell you is my BP went up with 800 IU in addition to 400 in an MV, and that in milk, and sunshine. Sure seem sto be a lot of emphasis on something we get from sun and in almost all milk products. There is an article showing asscoiation of low SERUM vit D with cancer, so my question is does the cancer lower it or does the lower serum level cause it? They ned to show a chemical apthway for proof. I'm not impressed with supplements. I've a 3 ft shelf of stuff that doesn't work. Regards Re: For Jane Fascinating. I wonder if anyone's studied blood levels during a course of oral vit. D supplementation? dave Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2008 Report Share Posted March 17, 2008 I am sure I have told this story before here so excuse me if you have heard it. When I studied Biochemistry in Medical School the effect of sun on vitamin D metabolism was discussed 1959 as I recall. The Professor told us that if a chicken walked from Hall to the Medical School on a good sunny day (10 minutes) he would get enough sun on his beak to make all the Vit D he needed for some days. So if you expose your pecker to 10 min of sun a day you should be OK? Was one of the questions an attentive medical student asked. The rest of the class fell out of their chairs. On Mar 16, 2008, at 3:45 PM, Dave wrote: > Fascinating. I wonder if anyone's studied blood levels during a course > of oral vit. D supplementation? > > dave > > Ellen wrote: > > > > Hi Jane, > > Be careful with supplements. Please check out this recent research > on > > vitamin D supplements: > > This scientific study shows the downside of taking vitamin D > supplements. > > http://www.sciencedaily.com/releases/2008/01/080125223302.htm > > <http://www.sciencedaily.com/releases/2008/01/080125223302.htm> > > Ellen > > jane@... <mailto:jane%40pipeline.com> wrote: > > > > > Thanks, Ellen. That makes sense. > > > > > > One thing I thought about after reading the article - if the > > > deficiency of Vitamin D is from lack of sun exposure, supplements > > > might help. The article was discussing deficiency of Vitamin D > from > > > disease, rather than from lack of sun. So in the instances where > the > > > deficiency is from lack of sun, supplements might not make the > > > disease process worsen, and might be helpful, whereas if it is > from > > > disease, the supplements would be problematic. > > > > > > Jane > > > > > > On Mar 9, 2008, at 5:18 PM, Ellen wrote: > > > > > > > You need to use the sun judiciously. No sunburns. That means if > you > > > > know > > > > you're going to be out in the sun at midday for more than 20 > > > > minutes, then > > > > definitely use sunscreen. Sunblocks definitely stop the > creation of > > > > vitamin > > > > D in your body. Look up on amazon.com the book " The UV > Advantage, " > > > > by Dr. > > > > Horlick. > > > > Ellen > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2008 Report Share Posted March 17, 2008 Yah. As a researcher I wonder if the gazillions of vit D supplements taken get into serum and how long they last. . . Clarence Grim wrote: > > I am sure I have told this story before here so excuse me if you have > heard it. > > When I studied Biochemistry in Medical School the effect of sun on > vitamin D metabolism was discussed 1959 as I recall. > > The Professor told us that if a chicken walked from Hall to the > Medical School on a good sunny day (10 minutes) he would get enough sun > on his beak to make all the Vit D he needed for some days. > > So if you expose your pecker to 10 min of sun a day you should be OK? > Was one of the questions an attentive medical student asked. > > The rest of the class fell out of their chairs. > > On Mar 16, 2008, at 3:45 PM, Dave wrote: > > > Fascinating. I wonder if anyone's studied blood levels during a course > > of oral vit. D supplementation? > > > > dave > > > > Ellen wrote: > > > > > > Hi Jane, > > > Be careful with supplements. Please check out this recent research > > on > > > vitamin D supplements: > > > This scientific study shows the downside of taking vitamin D > > supplements. > > > http://www.sciencedaily.com/releases/2008/01/080125223302.htm > <http://www.sciencedaily.com/releases/2008/01/080125223302.htm> > > > <http://www.sciencedaily.com/releases/2008/01/080125223302.htm > <http://www.sciencedaily.com/releases/2008/01/080125223302.htm>> > > > Ellen > > > jane@... <mailto:jane%40pipeline.com> > <mailto:jane%40pipeline.com> wrote: > > > > > > > Thanks, Ellen. That makes sense. > > > > > > > > One thing I thought about after reading the article - if the > > > > deficiency of Vitamin D is from lack of sun exposure, supplements > > > > might help. The article was discussing deficiency of Vitamin D > > from > > > > disease, rather than from lack of sun. So in the instances where > > the > > > > deficiency is from lack of sun, supplements might not make the > > > > disease process worsen, and might be helpful, whereas if it is > > from > > > > disease, the supplements would be problematic. > > > > > > > > Jane > > > > > > > > On Mar 9, 2008, at 5:18 PM, Ellen wrote: > > > > > > > > > You need to use the sun judiciously. No sunburns. That means if > > you > > > > > know > > > > > you're going to be out in the sun at midday for more than 20 > > > > > minutes, then > > > > > definitely use sunscreen. Sunblocks definitely stop the > > creation of > > > > > vitamin > > > > > D in your body. Look up on amazon.com the book " The UV > > Advantage, " > > > > > by Dr. > > > > > Horlick. > > > > > Ellen > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2008 Report Share Posted March 17, 2008 Dave, do you ever get a Vit D test? How is it? Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of Dave Yah. As a researcher I wonder if the gazillions of vit D supplements taken get into serum and how long they last. . . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2008 Report Share Posted March 18, 2008 The problem with all supplements is that when a deficiency in serum is detected in a test, there is an immediate conclusion it's because we don't eat enough of it. Rather, than look at the system that controls it in the body. I've read where vitamin D and Ca are used to give CVD to test animals. The intestine has the ability to absorb excess vit D uncontrolled by the liver. Refs: In rats: [Preparation of vascular calcification in vivo and vascular smooth muscle cell calcification in vitro of rats] OBJECTIVE: To investigate simple, economical, stable and efficient methods of in vivo and in vitro cardiovascular calcification models in rats. CONCLUSION: These methods can be used to produce calcification models in vivo and in vitro, which save money and time and are easy to manipulate. PMID: 16378124 In dogs: Hypercalcaemia in two dogs caused by excessive dietary supplementation of vitamin D. Mellanby RJ, Mee AP, Berry JL, Herrtage ME. Queen's Veterinary School Hospital, University of Cambridge, Madingley Road, Cambridge CB3 0ES. A three-year-old Border collie was presented with a two-week history of lethargy, stiff gait, polydipsia and polyuria. Biochemical analysis revealed hypercalcaemia. Serum concentrations of 25-hydroxyvitamin D (25[OH]D) and 1,25-dihydroxyvitamin D (1,25[OH]2D) were markedly elevated and parathyroid hormone was undetectable. Subsequent analysis of the dog's diet revealed that the food contained excessive amounts of vitamin D. The hypercalcaemia resolved following treatment with bisphosphonates and dietary change. Hypervitaminosis D was diagnosed in a second unrelated dog, which had been fed the same brand of dog food as case 1. The dog was also hypercalcaemic and had markedly elevated serum concentrations of 25(OH)D and 1,25(OH)2D. Hypervitaminosis D in dogs has been reported to occur secondarily to ingestion of either rodenticides containing cholecalciferol or antipsoriatic ointments that contain vitamin D analogues. Hypervitaminosis D has also been reported following the treatment of hypoparathyroidism. To the authors' knowledge, this is the first report of hypervitaminosis D in dogs following the accidental over supplementation of a commercial diet with vitamin D. While the benefits of adequate dietary vitamin D are well established in dogs, the potential deleterious effects of over supplementation of vitamin D should also be acknowledged. Case Reports PMID: 16035450 In cats: In the lungs, kidneys and stomach, the calcified lesions were associated with deposition of oxalate crystals. Serum chemistry showed more elevated values of 25-hydroxycholecalciferol (vitamin D) of the affected cats than the normal level. Retrospective examination revealed that these cats had been fed the commercial pet foods containing a large amount of vitamin D (6,370 IU/100 g diet) from their young age, and its value was about ten times as much as that of the control food (680 IU/100 g diet). Pathological changes found in the cats from the experimental vitamin D3 toxicosis were similar to those in the natural cases. In addition, tissue levels of calcium, phosphorous and zinc in the lungs and kidneys were markedly elevated in both natural and vitamin D-intoxicated cases. These findings suggest that long-term feeding of the pet food containing excessive vitamin D was responsible for the outbreak of the systemic calcinosis in the cats. PMID: 8593288 I intend to stick with the RDA. Regards Re: For Jane Yah. As a researcher I wonder if the gazillions of vit D supplements taken get into serum and how long they last. . . Clarence Grim wrote: > > I am sure I have told this story before here so excuse me if you have > heard it. > > When I studied Biochemistry in Medical School the effect of sun on > vitamin D metabolism was discussed 1959 as I recall. > > The Professor told us that if a chicken walked from Hall to the > Medical School on a good sunny day (10 minutes) he would get enough sun > on his beak to make all the Vit D he needed for some days. > > So if you expose your pecker to 10 min of sun a day you should be OK? > Was one of the questions an attentive medical student asked. > > The rest of the class fell out of their chairs. > > On Mar 16, 2008, at 3:45 PM, Dave wrote: > > > Fascinating. I wonder if anyone's studied blood levels during a course > > of oral vit. D supplementation? > > > > dave > > > > Ellen wrote: > > > > > > Hi Jane, > > > Be careful with supplements. Please check out this recent research > > on > > > vitamin D supplements: > > > This scientific study shows the downside of taking vitamin D > > supplements. > > > http://www.sciencedaily.com/releases/2008/01/080125223302.htm > <http://www.sciencedaily.com/releases/2008/01/080125223302.htm> > > > <http://www.sciencedaily.com/releases/2008/01/080125223302.htm > <http://www.sciencedaily.com/releases/2008/01/080125223302.htm>> > > > Ellen > > > jane@... <mailto:jane%40pipeline.com> > <mailto:jane%40pipeline.com> wrote: > > > > > > > Thanks, Ellen. That makes sense. > > > > > > > > One thing I thought about after reading the article - if the > > > > deficiency of Vitamin D is from lack of sun exposure, supplements > > > > might help. The article was discussing deficiency of Vitamin D > > from > > > > disease, rather than from lack of sun. So in the instances where > > the > > > > deficiency is from lack of sun, supplements might not make the > > > > disease process worsen, and might be helpful, whereas if it is > > from > > > > disease, the supplements would be problematic. > > > > > > > > Jane > > > > > > > > On Mar 9, 2008, at 5:18 PM, Ellen wrote: > > > > > > > > > You need to use the sun judiciously. No sunburns. That means if > > you > > > > > know > > > > > you're going to be out in the sun at midday for more than 20 > > > > > minutes, then > > > > > definitely use sunscreen. Sunblocks definitely stop the > > creation of > > > > > vitamin > > > > > D in your body. Look up on amazon.com the book " The UV > > Advantage, " > > > > > by Dr. > > > > > Horlick. > > > > > Ellen > > > > > > > Quote Link to comment Share on other sites More sharing options...
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