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What was your CWD's a1c upon diagnosis?

Discussion in 'Parents of Children with Type 1' started by MegaPug, Mar 29, 2011.

  1. monkeyschool

    monkeyschool Approved members

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    They didn't give us the numbers at the hospital, I will have to ask. She was 13.5 at the two week post appointment.
     
  2. jcanolson

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    Glad I'm not the only one! Nat was 13.8 or 16.something. I'm pretty sure it was in the 16's. Slow onset and we also had no clue. :eek:
     
  3. mommylovestosing

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    Ella's was 10.6, BG over 700, major ketones, DKA, airlifted to Hopkins PICU. 5 day stay...

    :(

    My dad was a T1. I felt so bad that it got that far. Ped kept giving me valid explanations for the symptoms. Finally my mommy instinct kicked in...
     
  4. ShelbysMom

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    Strange but DD's sugar was 800 but her a1C was still a 5.8. I remember this b/c endo was very surprised. She was not in DKA but did have large urine ketones. I caught it very quickly b/c of family history.....basically sent my dad to buy ketone strips and caught it myself the first day she felt really sick. That was late afternoon after school. DD spent that one night at the hospital and they discharged her first thing next morning to go to endo in neighboring town. Spent two hours at endo and were sent home to begin life with D. So basically we were on our own about 18 hours after first going to ER.
    I realize how fortunate we were after reading stories of DKA. Must have been crazy scary but we were somehow lucky to avoid it.
     
  5. txmom

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    This is embarassing.....

    Grant's A1C was 10.5 at diagnosis, BG was 235. I got the creepy hair standing on the back of my neck thing in the morning and took him to a med stop to have his BG checked. They bopped back into the room and told me "yup, he has diabetes".....no further discussion, no advice.

    We left the clinic and were unsure of what to do next. I got on the internet to figure out what type of doctor treats diabetes, called a couple of endos to make an appointment - all appointments were 60 days out. Finally I asked if we were really going to ignore the diagnosis for 2 months, they sent me to the hospital, we stayed for 6 days.
     
  6. saxmaniac

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    Embarrassing?! I think this shows you are SUPER smart. I don't think I would have been smart enough to push for this.

    Alex was 10.something at dx -- no DKA.
     
    Last edited: Mar 30, 2011
  7. VinceysMom

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    Vince was 8.5 at dx - Dec 26 2009 -- (his "pre-official-diagnosis was 7.4 in Aug '09 - story in diagnsis thread), and he had dropped 16 lbs :(
    We spent 4 days at Rainbow...

    Have since managed to hover around 7.0... hoping tomorrow's apptmt will be under 7.
     
    Last edited: Mar 30, 2011
  8. Tuff

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    Ours was 9.6. No ketones. No symptoms except stomach aches, moodiness and bedwetting. He was diagnosed with constipation but I insisted on a test for diabetes and was told there was no indication of it. Got a call when I got home to get my son to the hospital asap. At hospital for his first finger poke it was too hi to read. They asked how did I know? A mothers instinct..T
     
    Last edited: Mar 31, 2011
  9. zapsmom

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    Zoee was 11 or 12. She was starting to go into DKA when she was dx'd.
     
  10. TheFormerLantusFiend

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    At the hospitals it was tested at, they only tested up to 14 and 16 respectively, and my A1c was higher than both of those numbers.
    I was right on the border between moderate and mild DKA.
    I had been about the same degree of sick for a few weeks, but had been losing weight and accumulating more symptoms over a period of years.
    I was antibody positive for GAD 65 and ICA 512, negative for IA2.
    My c-peptide was too low to be measured.
     
  11. DsMom

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    You know, I don't even know WHAT his A1c or BG was at diagnosis. One...I had no idea what an A1c was. Someone probably told me--I think I remember my sister saying it wasn't bad at all--but I was so tired and in shock I didn't hear and can't remember. I know everyone kept saying we caught him very early--so I don't think it was that high. Daniel was not sick at all at dx--was active and running around in the hospital. With D in our family and with my sister encouraging me to keep an eye on him, we got him dx fairly early, I think.

    I've been curious about those numbers, but keep forgetting to ask his endo.
     
  12. monkeyschool

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    We confused all the symptoms (not that we really knew what we were looking at) - thought it was a flu, maybe it was the new schedule, etc. As soon as we walked into the ER the triage nurse said - I think I can bet it's diabetes, lol She came into the ER room once we got the diagnoses and said..."I felt so bad. I knew that's what it was the moment you told me the symptoms. I was hoping they'd find it to be something else."

    The odd thing is that when I searched online her symptoms it kept saying "Water Poisoning" and possible Kidney Damage. Nothing that I recall pointed me to suspect T1D.

    They really should post something in the peds office.

    Our 3 week post A1C was 10....it went down 3.5 in a week's time. We've had a lot of lows in the last couple of weeks, but are having highs this week - not sure if it is because we are on spring break for some classes.
     
  13. suz

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    Timely question, I asked our endo this at our appt last week because I really didn't know. Apparently he was 13.5, his bg was 540. She said he was just a day or two away from DKA, so thankfully we caught it in time
     
  14. MegaPug

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    Thank you for all your answers. This is very interesting and somewhat reassuring. Meg's BG was over 700 and was in severe DKA and in and out of coma. She had been diagnosed with Mono just a couple of days before, so her lethargy and other symptoms were masked by that. However, on the day I decided to take her to the ER, I just had a nauseating feeling she was gravely ill and looked like death.

    I cried that whole night in PICU thinking how close we came to losing her. They said she would be in there several days, but she responded well and was moved to regular peds after one night, and then we were able to go home the next day as well.

    My other two kids will be tested soon. I have particular concern for my 14 yr old son who already has three autoimmune disorders, just like Meg.

    I agree with the other poster who said this isn't something to be embarrassed about. I think that clinic should be embarrassed, though. You did great, imo! :)
     
  15. StillMamamia

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    I don't remember - 13, 14 or higher?? Bgs were in the 900s, but I don't remember the A1c. 1 week hospital.
     
  16. mom24grlz

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    I can't even imagine BS in the 800-1000 range. Wow! When Ashleigh was first DX her BS was 410 (the highest it has ever gotten was 465), and I thought that was really high.
     
  17. Jilleighn

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    Loren was 18months old and I recall her a1c being over 12 or 13, her Blood sugar in the ER was 850+ once they moved her to PICU it was 900+. Her blood oxygen gas was a 2 and she was in DKA and slipping into a coma. She stayed in PICU for 3 days and then moved to the regular hospital floor for 5 days.
     
  18. Mom2Deacon

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    Deacon was 9.1 and his BG was 282. I caught his really early.

    --Sara
     
  19. kiwikid

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    7.4 dka bg 432 :(
     
  20. Danielle2008

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    Honestly, that week was such a blur, I remember certain numbers(or 'around there' numbers), but nothing exact.

    I know my A1C was between 8.4-8.7 . I think more like 8.4, but my parents both have given higher numbers. My BG at the time of diagnoses was over 700 though. The meters all just read HI, and at the doctors office they did a urine strip test, and it said it was over 1000. I went to Children's ER, and I was not in DKA, so they just gave me insulin(fast acting, and lantus), and told me to go to the BDC the next morning. At the BDC they did a blood ketone test, and I feel like she said it was 3.3 (I remember her saying 3 something very clearly, but I had no idea what it meant...so it was in one ear out the other). Is that a number with blood ketone strips?? I just remember she said it was high, and asking if I felt sick. At the time, I didn't(beyond the lethargy and thirst, but I didn't feel sick to my stomach then)...and she was shocked.
     

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