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<blockquote data-quote="Hound dog" data-source="post: 168068" data-attributes="member: 84"><p>Thanks for asking Heather.</p><p> </p><p>My son, the rarity. You'd be surprised at how old that can get.</p><p> </p><p>The tests came back ok. Or so the oncologist said. No cancer. Good thing. Yes it is.</p><p> </p><p>BUT (and with this kid there is always a BUT) She can't account for the fact that his blood cell counts are no longer extremely high. Polycythemia is not a disease that self corrects. I know via my own research and because I pinned her down on that this time once and for all.</p><p> </p><p>Yet he still has polycythemia because of what was going on during the time of diagnosis. ugh</p><p> </p><p>Still working on that second opinion. I'm hoping to find someone with some experience with this if I can.</p><p> </p><p>Personally, and this is gonna sound awful, I think the lab at our hospital might be messing up the samples. Wouldn't surprise me, not after doing my clinicals there myself. I KNOW how some of them draw blood and it's not the proper way. I know how they handle the vials. Also not proper for accurate results.</p><p> </p><p>diagnosis the oncologist is positive is dead on. Travis' blood was tested by 3 different labs, 2 doctor offices, and the bone marrow came back abnormal as h*ll.</p><p> </p><p>What POed me the most is that she and I both know what can cause his cbc to drop back within a fairly normal range. A bleed. Has she tested for that possiblity? No. Nothing. Doesn't have to be a huge bleed either. A small stroke would be enough. And many of those go unnoticed.</p><p> </p><p>So I'm hunting down a doctor for that 2nd opinion. And I'm trying like heck to find one who has treated polycythemia so they can at least have some experience to draw on. This doctor admitted she's never come across it before. ugh</p><p> </p><p>So it's still a work in progress. Meanwhile the boy has dropped another 5 pounds. In the course of about 6 mos he went from a size 38 to a size 32 being a bit too big.</p><p> </p><p>Sorry. Didn't mean to unload like that on you. We just saw her the other day and it's still a touchy subject with me. I get furious everytime I think about it.</p><p> </p><p>((hugs))</p></blockquote><p></p>
[QUOTE="Hound dog, post: 168068, member: 84"] Thanks for asking Heather. My son, the rarity. You'd be surprised at how old that can get. The tests came back ok. Or so the oncologist said. No cancer. Good thing. Yes it is. BUT (and with this kid there is always a BUT) She can't account for the fact that his blood cell counts are no longer extremely high. Polycythemia is not a disease that self corrects. I know via my own research and because I pinned her down on that this time once and for all. Yet he still has polycythemia because of what was going on during the time of diagnosis. ugh Still working on that second opinion. I'm hoping to find someone with some experience with this if I can. Personally, and this is gonna sound awful, I think the lab at our hospital might be messing up the samples. Wouldn't surprise me, not after doing my clinicals there myself. I KNOW how some of them draw blood and it's not the proper way. I know how they handle the vials. Also not proper for accurate results. diagnosis the oncologist is positive is dead on. Travis' blood was tested by 3 different labs, 2 doctor offices, and the bone marrow came back abnormal as h*ll. What POed me the most is that she and I both know what can cause his cbc to drop back within a fairly normal range. A bleed. Has she tested for that possiblity? No. Nothing. Doesn't have to be a huge bleed either. A small stroke would be enough. And many of those go unnoticed. So I'm hunting down a doctor for that 2nd opinion. And I'm trying like heck to find one who has treated polycythemia so they can at least have some experience to draw on. This doctor admitted she's never come across it before. ugh So it's still a work in progress. Meanwhile the boy has dropped another 5 pounds. In the course of about 6 mos he went from a size 38 to a size 32 being a bit too big. Sorry. Didn't mean to unload like that on you. We just saw her the other day and it's still a touchy subject with me. I get furious everytime I think about it. ((hugs)) [/QUOTE]
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