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Thread: Past lab results - important?

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    Default Past lab results - important?

    Had The Worst rheumy visit today...first time at the new clinic (had to switch docs since diagnosing docs bungled my daughter's kidneys going bad this past fall.) One whatthewhat moment was when new doc said she doesn't need to see old labs - won't request medical files sent over...does this make sense to anyone?? I thought it was good to look for patterns? Dumbfounded. There was a lot else that went down, and we will not be going back to this clinic for this child, but still I'm curious as to your reactions. Thanks.

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    I'm so sorry that happened as our past medical records are so important in determining what works for our individual cases. This is not a 'by the book' illness.

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    Quote Originally Posted by whatthewhat View Post
    Had The Worst rheumy visit today...first time at the new clinic (had to switch docs since diagnosing docs bungled my daughter's kidneys going bad this past fall.) One whatthewhat moment was when new doc said she doesn't need to see old labs - won't request medical files sent over...does this make sense to anyone?? I thought it was good to look for patterns? Dumbfounded. There was a lot else that went down, and we will not be going back to this clinic for this child, but still I'm curious as to your reactions. Thanks.
    Sounds like a wise decision on your part not to return unless you believe for some reason she was just having a bad day and doesn't usually behave this way.
    Knowledge is power! Wisdom is using it to make good decisions!

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    WHAT THE ........

    Is this specialist declaring to be a WG expert. No way should anything be done without the full record.
    It can be done - but in my books, Shouldn't
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

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    You have ever right to ALL of those records and they are very necessary for follow physicians.
    They should provide you with dvd's(for your new drs) of all her records and paper copies (for your reference).

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    Lol, the minute I asked the doc to take a few deep breaths (and she didn't) I knew things were going south. It was a horrid appointment. Total clash of expectations on the dr/pt relationship, on both sides - and she lost her temper and did not in my mind retrieve it. By the end of the visit my daughter and I are both audibly weeping, I kid you not, and the doc never even comforts the kid her patient. So, no, not going back with this kid, but the thing about the doc not caring to see past lab work really threw me. I've learned so much about how this disease affects my daughter by reading her lab work over the past year, and it seems like watching it another year will give me even more info about her particulars. Also the doc said she basically just keeps an eye "on the main organ systems, ANCA a and PR3 can't tell us anything, really." Now, I understand statistics okay, and there is a difference between ANCA measurement is not solely reliable across the board and ANCA measurement never being helpful. It's pretty clear to me that her PR3 shot up before her flare began last fall. But that's something this doc would never know. I mean, I could be wrong, but the only way to tell is to give it time. I think.

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    My daughter was her ninth Wegener's patient. Don't judge me! Pediatric rheumatologists are hard to find, and some with Wegener's experience are crazy rare. Mind you, our first ped rheumy had like 60 Wegeners patients and he almost cost our daughter her kidneys. ..
    Quote Originally Posted by mishb View Post
    WHAT THE ........

    Is this specialist declaring to be a WG expert. No way should anything be done without the full record.
    It can be done - but in my books, Shouldn't

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    Quote Originally Posted by whatthewhat View Post
    Lol, the minute I asked the doc to take a few deep breaths (and she didn't) I knew things were going south. It was a horrid appointment. Total clash of expectations on the dr/pt relationship, on both sides - and she lost her temper and did not in my mind retrieve it. By the end of the visit my daughter and I are both audibly weeping, I kid you not, and the doc never even comforts the kid her patient. So, no, not going back with this kid, but the thing about the doc not caring to see past lab work really threw me. I've learned so much about how this disease affects my daughter by reading her lab work over the past year, and it seems like watching it another year will give me even more info about her particulars. Also the doc said she basically just keeps an eye "on the main organ systems, ANCA a and PR3 can't tell us anything, really." Now, I understand statistics okay, and there is a difference between ANCA measurement is not solely reliable across the board and ANCA measurement never being helpful. It's pretty clear to me that her PR3 shot up before her flare began last fall. But that's something this doc would never know. I mean, I could be wrong, but the only way to tell is to give it time. I think.
    It is true that there are some people that ANCA values do not correlate well with flares, but this is not the most common from the literature.
    I would never totally disregard ANCA values and they don't use solely for treatment determination, but it is definitely, worth looking at along with inflammatory markers when someone has symptoms. For the kidneys, it is best to dip the urine periodically if kidneys are involved, but there is no test for the lungs. Lung problems can get really bad before we get treatment. This is why it is important to look all related factors.

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    Quote Originally Posted by whatthewhat View Post
    My daughter was her ninth Wegener's patient. Don't judge me! Pediatric rheumatologists are hard to find, and some with Wegener's experience are crazy rare. Mind you, our first ped rheumy had like 60 Wegeners patients and he almost cost our daughter her kidneys. ..
    That is really sad and it shows that weg's is no longer rare.

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    Quote Originally Posted by mrtmeo View Post
    It is true that there are some people that ANCA values do not correlate well with flares, but this is not the most common from the literature.
    I would never totally disregard ANCA values and they don't use solely for treatment determination, but it is definitely, worth looking at along with inflammatory markers when someone has symptoms. For the kidneys, it is best to dip the urine periodically if kidneys are involved, but there is no test for the lungs. Lung problems can get really bad before we get treatment. This is why it is important to look all related factors.
    I had serious lung involvement and asked my expert at Mayo what warning signs I should be aware of. They are same indicators that preceded my first diagnosis, trouble breathing, fever, pain in chest, and coughing up fresh blood. The last indicator usually means thngs are already pretty serious. Mayo also does a chest X-ray at every check up to assess any changes in the lungs. X-Rays are often done when there is extensive lung involvement and I had dozens of them when in the hospital.
    The dip stick is best way to check for kidney involvement along with monthly labs.
    Knowledge is power! Wisdom is using it to make good decisions!

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