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  1. #51
    KpbS's Avatar
    KpbS is offline Red Diamond level (10,000+ posts)
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    Quote Originally Posted by bisous View Post
    OP, those glucose numbers, especially the one on 5/12 is kinda high. Was the doctor at all concerned? I know when kids with type 1 diabetes are on a steroid they often have runaway high blood sugars but I've always considered that that was because their bodies aren't regulating insulin in the blood and instead we're relying on external formulas, etc. I just wonder if that prompted any potential red flags to the doctors? Also, please know that I'm no kind of expert at all! I am just seeing those numbers and it gives me questions.

    I truly hope the doctors figure it out. I'm praying for you to that in! Clearly something is happening. I'm also praying that your DS is comforted while he is feeling so crummy!
    I noticed his sugar levels were high also and it was the days before the steroid (based on your dates)—I know oral steroid can influence blood sugars. Did they mention this?
    K

  2. #52
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    hillview is offline Blue Diamond level (20,000+ posts)
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    Thanks they started a massive dose of steroids on the 11th we are keeping an eye on the sugars. He tested positive for some antibodies that they need to look further into. This is going to be a month of more of dx work I think. Thank you all. DS went to school today and made it (although very tired) which is good.
    DS #1 Summer 05
    DS #2 Summer 07

  3. #53
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    Quote Originally Posted by hillview View Post
    THANK YOU! His Folate and B12 were good (normal range) and he is now on vitamin tablets to help him keep them up. He was dx with idiopathic (we don’t know why) autoimmune hemolytic anemia. Billi is super high (as you’d expect when your immune system is killing RBC). We get another test tomorrow. He is now on 120 mg of Prednisone a pretty high dose. Here are some basics:
    hemoglobin
    Baseline 14
    5/10 8.1
    5/11 7.9 noon (then started steroids)
    5/11 7.9 pm
    5/12 8.3 am
    5/12 8.0 noon
    5/12 8.1 pm (infusion expected a 9 after)
    5/13 8.6 am
    5/13 8.4 pm (first oral steroid lower dose)
    5/14 8.5


    Reticulocytes
    5/12 .308
    5/12 .295
    5/12 .303
    5/13 .311
    5/13 .297
    5/14 .287


    Glucose
    5/11 100
    5/12 177
    5/13 164
    5/14 120
    Did they do haptoglobin, liver function, or thyroid testing? ETA: also LDH and DAT?
    Last edited by zukeypur; 05-18-2022 at 09:14 AM.

  4. #54
    hillview's Avatar
    hillview is offline Blue Diamond level (20,000+ posts)
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    Quote Originally Posted by zukeypur;[URL="tel:4422248"
    4422248[/URL]]Did they do haptoglobin, liver function, or thyroid testing?
    Yes all normal. He has about 50 different blood tests at this point. Yesterday they tested for lupus and some other not great things.
    DS #1 Summer 05
    DS #2 Summer 07

  5. #55
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    Quote Originally Posted by hillview View Post
    Yes all normal. He has about 50 different blood tests at this point. Yesterday they tested for lupus and some other not great things.
    That was where I was going next. I'm not a doctor, but I (like several others here) am a clinical laboratory scientist. I am the program director of a lab program and teach many of the classes, so I am happy to help if you need assistance in interpreting the test results.

  6. #56
    hillview's Avatar
    hillview is offline Blue Diamond level (20,000+ posts)
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    Quote Originally Posted by zukeypur;[URL="tel:4422279"
    4422279[/URL]]That was where I was going next. I'm not a doctor, but I (like several others here) am a clinical laboratory scientist. I am the program director of a lab program and teach many of the classes, so I am happy to help if you need assistance in interpreting the test results.
    Thank you so much. Here are the tests he is having done (in addition to CBC and metabolic panel — his tests from yesterday came back with Hemoglobin of 9.2 up from 8.5 and blood sugar at a normal level which is good he is still on 120 mg of prednisone)
    30340-Beta-2-Glycoprotein I Antibodies (IgG, IgA, IgM)
    7352-Cardiolipin Antibodies (IgA, IgG, IgM)
    15780-DRVVT Screen With Reflex To DRVVT Confirm And DRVVT 1:1 Mix
    4420-C-Reactive Protein (CRP)
    7832-Sjogren'S Antibodies (SS-A, SS-B)
    19887-RNP Antibody
    37923-Sm Antibody
    255-DNA (Ds) Antibody

    The codes in front are from what I can tell the Quest Lab codes (or maybe more common coding for these tests). THANK YOU
    DS #1 Summer 05
    DS #2 Summer 07

  7. #57
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    Quote Originally Posted by hillview View Post
    Thank you so much. Here are the tests he is having done (in addition to CBC and metabolic panel — his tests from yesterday came back with Hemoglobin of 9.2 up from 8.5 and blood sugar at a normal level which is good he is still on 120 mg of prednisone)
    30340-Beta-2-Glycoprotein I Antibodies (IgG, IgA, IgM)
    7352-Cardiolipin Antibodies (IgA, IgG, IgM)
    15780-DRVVT Screen With Reflex To DRVVT Confirm And DRVVT 1:1 Mix
    4420-C-Reactive Protein (CRP)
    7832-Sjogren'S Antibodies (SS-A, SS-B)
    19887-RNP Antibody
    37923-Sm Antibody
    255-DNA (Ds) Antibody

    The codes in front are from what I can tell the Quest Lab codes (or maybe more common coding for these tests). THANK YOU
    Glad they are doing thorough testing. From what I've found, SLE, Sjogren's, antiphospholipid syndrome, and IgA deficiency might match his clinical symptoms. Hopefully those tests will give you guys an answer. I'm glad his hgb is up.

  8. #58
    KrisM is offline Clean Sweep forum moderator
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    I've somehow missed this. I hope things start moving in the right direction for him. You are doing a great job, mom!
    Kris

  9. #59
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    Quote Originally Posted by KrisM View Post
    I've somehow missed this. I hope things start moving in the right direction for him. You are doing a great job, mom!
    Me too! So scary you are going through this, sending prayers you get some answers and it's an easy fix.
    Angie

    Mom to
    DD- 9/09-9/09
    DS- 2011 DS2- 2012 DS3- 2015 DD-2019

  10. #60
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    Hillview, do you have an update? How is your DS feeling now? (((hugs)))
    K

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