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<blockquote data-quote="Hound dog" data-source="post: 156605" data-attributes="member: 84"><p>I've got easy child working on the 2nd opinion. We've decided it would probably be best to go thru her hospital this time as they are a part of the cincy area hospitals, located right outside of cincy.</p><p> </p><p>I'm all but completely fed up with small town docs. In all the years we've been down here I've come across only about 2 or 3 worth a hoot, and they don't stick around. Travis' neuro was one of them and we discovered he left for florida. So it looks like we're also on the hunt for a new neuro as well.</p><p> </p><p>Making this tougher, Travis is being bull headed again. Just mentioning the bone marrow test made him go ballistic on the way home. He swears he won't have another. Can't say I blame the kid for feeling that way. It's an awfully painful procedure to have done despite the anesthetics. So now I have to work on him. I'm using the fact that with a diagnosis he stands a good chance of getting medications to help with his symptoms so he'll feel better. As getting into complicated facts just confuses as overwhelms him. I won't go into facts until I have actual facts to go into, if you know what I mean.</p><p> </p><p>doctor is looking for the leukemia. I can't stand the fact they won't come right out and say it. Drives me nuts. But oh well, I know, and she knows I know, what she's looking for.</p><p> </p><p>The good thing is we should have the results on the lymphocytes back in 7-10 days. They've sent those samples to the University of Columbus lab. If she doesn't call me, I'll be calling her.</p><p> </p><p>What really, really irritates me is that she said that although he was given the polycythemia diagnosis 3 yrs ago, the bone marrow didn't actually confirm polycythemia. The diagnosis was made based on his history and the blood results and that the bone marrow was abnormal. NOW she says that it is possible that what they saw in the bone marrow 3 years ago could possibly be a precurser to what is happening with him now. WTF??</p><p> </p><p>I am not a person who puts docs up on pedistools. I don't expect them to always know all of the answers. But I'm wishing I'd asked her if she has ever actually <strong>treated</strong> a case of polycythemia, or one in a young person. What I'm getting from her sounds more textbookish knowledge of what we <strong>should</strong> be seeing, but aren't blah blah blah. Where as someone with experience might tell you that while also explaining that not every patient is going to go "by the book".</p><p> </p><p>So. Did they get the initial diagnosis wrong with the polycythemia? Hard to tell as the tests were sure coming back that way except for the bone marrow which <strong>was </strong>showing an abnormal development of cells. And good grief we're not just talking about a couple of blood tests here, but a series of 3 done by the nuero, the series of 5 done by the oncologist herself. </p><p> </p><p>OR. Did they miss dxing something more serious such as leukemia by assuming it was the polycythemia? </p><p> </p><p>OR Has the polycythemia progressed into the leukemic stage?</p><p> </p><p>That 3rd "or" is what both easy child and I are afraid of. Not that the other possiblities aren't bad too. Guess we're talking lesser of evils here.</p><p> </p><p>And as I've said before, Travis has never come anywhere near this so called "book". This boy is unique. Whatever is going on I'm positive has been going on throughout his lifetime. When I stumbled upon the fact that polycythemia can show up in newborns with the same results as what happened at Travis' birth it pretty well confirmed it for me.</p><p> </p><p>I guess time will tell. Time to dig out my <img src="/community/styles/default/xenforo/smilies/Graemlins/warrior.gif" class="smilie" loading="lazy" alt=":warrior:" title="warrior :warrior:" data-shortname=":warrior:" /> and dust it off.</p></blockquote><p></p>
[QUOTE="Hound dog, post: 156605, member: 84"] I've got easy child working on the 2nd opinion. We've decided it would probably be best to go thru her hospital this time as they are a part of the cincy area hospitals, located right outside of cincy. I'm all but completely fed up with small town docs. In all the years we've been down here I've come across only about 2 or 3 worth a hoot, and they don't stick around. Travis' neuro was one of them and we discovered he left for florida. So it looks like we're also on the hunt for a new neuro as well. Making this tougher, Travis is being bull headed again. Just mentioning the bone marrow test made him go ballistic on the way home. He swears he won't have another. Can't say I blame the kid for feeling that way. It's an awfully painful procedure to have done despite the anesthetics. So now I have to work on him. I'm using the fact that with a diagnosis he stands a good chance of getting medications to help with his symptoms so he'll feel better. As getting into complicated facts just confuses as overwhelms him. I won't go into facts until I have actual facts to go into, if you know what I mean. doctor is looking for the leukemia. I can't stand the fact they won't come right out and say it. Drives me nuts. But oh well, I know, and she knows I know, what she's looking for. The good thing is we should have the results on the lymphocytes back in 7-10 days. They've sent those samples to the University of Columbus lab. If she doesn't call me, I'll be calling her. What really, really irritates me is that she said that although he was given the polycythemia diagnosis 3 yrs ago, the bone marrow didn't actually confirm polycythemia. The diagnosis was made based on his history and the blood results and that the bone marrow was abnormal. NOW she says that it is possible that what they saw in the bone marrow 3 years ago could possibly be a precurser to what is happening with him now. WTF?? I am not a person who puts docs up on pedistools. I don't expect them to always know all of the answers. But I'm wishing I'd asked her if she has ever actually [B]treated[/B] a case of polycythemia, or one in a young person. What I'm getting from her sounds more textbookish knowledge of what we [B]should[/B] be seeing, but aren't blah blah blah. Where as someone with experience might tell you that while also explaining that not every patient is going to go "by the book". So. Did they get the initial diagnosis wrong with the polycythemia? Hard to tell as the tests were sure coming back that way except for the bone marrow which [B]was [/B]showing an abnormal development of cells. And good grief we're not just talking about a couple of blood tests here, but a series of 3 done by the nuero, the series of 5 done by the oncologist herself. OR. Did they miss dxing something more serious such as leukemia by assuming it was the polycythemia? OR Has the polycythemia progressed into the leukemic stage? That 3rd "or" is what both easy child and I are afraid of. Not that the other possiblities aren't bad too. Guess we're talking lesser of evils here. And as I've said before, Travis has never come anywhere near this so called "book". This boy is unique. Whatever is going on I'm positive has been going on throughout his lifetime. When I stumbled upon the fact that polycythemia can show up in newborns with the same results as what happened at Travis' birth it pretty well confirmed it for me. I guess time will tell. Time to dig out my :warrior: and dust it off. [/QUOTE]
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