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Newly diagnosed---worried

Discussion in 'Parents of Children with Type 1' started by KHM, Mar 24, 2010.

  1. wilf

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    Note that if you have the stamina, a 24-hour period of hourly BG measurements should provide enough information for us on here to identify if she's going low and rebounding. So going this route is also an option.. :cwds:
     
  2. KHM

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    @Wilf:
    got it; thanks.
     
  3. saxmaniac

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    Hourly is great but I think you can get all the data you need with 2-hour tests here. Get some sleep! :)
     
  4. sooz

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    I just want to voice my confidence in Wilf's knowledge and experience and encourage you to trust his insight.

    I have a question that I havent seen addressed here yet, and that is regarding the levimir administration. You said you gave it between 8-9 I believe. We were told that it had to be EXACTLY the same time every day (or as much as we could make it exact) and we tried to do that when we were on mdi. Is that important everyone? I mean, switch the times if that is important, but once the switch is made to whatever time, is it or is it not important for it to be consistent each day?

    Glad you found this place!
     
  5. saxmaniac

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    You want to be within in a hour or two, we've changed it routinely with no ill effects. Giving at 8pm one day and 7pm the next is no big deal. You don't want to give it at 8pm one day, 3am the next, and so on.
     
  6. Jacob'sDad

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    A 72hr CGM study would be nice. I don't know if your endo would go for that. She might, since he's assuming you're giving adequate if not too much insulin. If there's something weird going on, then she should be on board with finding it. 72 hours of constant BG data would likely expose any lows that you might be missing.

    Putting myself in your endo's shoes: It might be pretty tough to suggest giving more insulin to a child that is already using double or more of the average insulin for a child of her size. BUT she should ABSOLUTELY want to figure out what is going on here. I don't know how she can stand NOT getting to the bottom of this. Where is her professional pride?

    If you can't get a CGM study, then I agree with checking almost every hour for at least one day. And I try to get an appointment with another endo. You have a challenging situation here, and you need an endo who is willing to accept that challenge and do what it takes to figure this all out.
     
  7. Darryl

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    I suggest that you find a certified diabetes educator (CDE) to help you. There is nothing about managing blood sugar that requires an endocrinologist.

    Here is a link to locate a CDE:
    http://www.diabeteseducator.org/DiabetesEducation/Find.html

    Typically CDE's may charge you by the visit, but you probably won't have to wait for an appointment. They often are more accessible, knowlegeable, and caring than endo's.
     
  8. KHM

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    I think at some point I'll bring her work on our case to the attention of interested parties but I'm too frustrated, too concerned with more important features of the problem, just now. But yeah--someone is going to know. Most of our communication has been by email so things are documented very well....
     
  9. wilf

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    I respectfully disagree. It won't kill the parents to test hourly for a 24-hour period if they can't get a CGM, and the data would be invaluable. There is something badly wrong with the current insulin regimen, that 2-hour test intervals won't necessarily help solve.
     
  10. Annapolis Mom

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    I would like to add to those who are encouraging you to trust WILF.

    It must be hard to come to an online community and take such important medical advice from a stranger who could be anyone. But Wilf is incredibly smart about diabetes and incredibly caring to everyone here.
     
  11. krossiter

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    I'm just going to throw this out there.....my daughter was diagnosed in January this year. Her body was very resistant to the insulin and it took a solid two weeks for us to get her numbers out of the 200-300's. Given, we did not go inpatient as I already have a T1 at home and so we went with conservitive amounts to begin with. But we had to steadily increase her doses (she was actually getting as much insulin as my 12 year old son gets at meals, which scared the CRAP out of me.) Anyway, when her body finally started reacting to the insulin, we had to then back way off on the amount she was getting. Our Endo is AWESOME and he said sometimes it just takes some time for the body to accept and react to the insulin to get out of those high numbers. Not to disrespect the other opinions, just wanted to throw it out there for consideration. :eek:

    Kim
    Kolt 12, diagnosed 8/03, pumping MM
    Kash, non-d
    Kwynlan, 6, diagnosed 1/10, pumping MM
     
  12. Toni

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    You do need to correct if she is, say 350 overnight and you are right, you do NOT want to overcorrect. Ask endo for a correction factor for night. If he won't give one, I would still go ahead and correct cautiously at first. For instance I might start with giving one-quarter the insulin dose you use in the day for corrections. See how that works. Probably won't touch her much. You will soon see that. I think you would be safe with half corrections if your endo won't give overnight correction factor but at least try the quarter corrections. Because I don't think you should leave her in the 300s overnight.
     
  13. wilf

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    This is a valid point, and thanks for raising it. :)

    It is common for there to be elevated insulin resistance for a couple of weeks after diagnosis, as the body's tissues slowly release the glucose that had built up in them.

    But the OP indicated it's been over a month in their case, which would speak against that.

    Certainly the proposed hourly testing for a 24-hour period would help in getting to the bottom of this.
     
  14. wilf

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    Just curious, did you bother to read the other posts in the thread before making this post?
     
  15. denise3099

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    Yes, do a 24 hr bs at 1 hr intervals, since that will tell you what you need to know. Yes, follow Wilf's advice regarding lowering the dose, since you'll know within a few days if that's the problem (I personally think you would see lows by now if you are having rebounds, but I do think this is a good way to rule this out before you proceed aggressively and with confidence). She is on a lot of insulin for her age and wieight--not to say she doesn't need it b/c everybody's different, but this may be why your endo is being such a jerk. :rolleyes: Yes, to getting a new endo--glad you are on that.

    However, something that hasn't been mentioned that I can see--your daughter needs a full pediatric check-up. Ideally a new endo would order a work-up to check for other endocrine and metobolic disorders, but since yours has her head up her, er, in the sand ;) , then you need to go to your ped and explain the hair falling out, the gastro-intestinal distress, and yes the high bs. Your ped might then refer you to an endo and get you an emergency appt so you don't have to wait until the end of April. Or he might go ahead and order the tests so you have the info when you go. I would NOT wait til you get the bs worked out to take her to the ped and ask for help with her other issues. Call the ped and make an appt ASAP.

    So sorry you are dealing with this. Good luck to you.
     
  16. sammysmom

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    Seems like you are turning into the posting police lately. Relax, others besides you can chime in even if it has already been posted. :rolleyes:
     
  17. Christopher

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    I second that motion...R e l a x......:cwds:
     
  18. sammysmom

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    Full pediatric check up. Good point.
     
  19. spamid

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    Just wanted to say we are sorry you have to join our world, but you have found the best place on the web for support and advice! I won't post advice, as you have already gotten lots, but continue to let us know what your daughter's numbers are. Come often and vent, cry, etc.


    (((HUGS)))
     
  20. saxmaniac

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    True, but it's good etiquette to scan the other replies before posting, and adjust accordingly. It makes it seem like you are actually listening to the other people in the conversation.

    I speak of this as a doofus who often does not intuitively "get" social customs, and have to think logically why I should act a certain way. :)
     

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