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We've been testing too much...

Discussion in 'Parents of Children with Type 1' started by januaryblue, Jun 7, 2010.

  1. januaryblue

    januaryblue Approved members

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    Just got off the phone with the CDE. She said we've been testing too much and the doctor said they don't want us testing more then 4 times a day and to no longer do the 2am test. They have also dropped her Lantus down to 1 unit AM and PM and said to not do the Novolog for now (which we haven't been as her numbers aren't waranting it) as the Lantus is doing enough for her right now. I would have a harder time not testing as much if they hadn't cut down the Lantus and told us to do the Novolog. Lows are my biggest fear. Having had a dad with T1, I know how scary the lows can be. :( I still have a feeling that letting go of that will be hard for me.

    Also, I finally went to the public school today to register my girls (they were in a private school last year and I can't afford it any more) and I was telling them about the D dx and I was told they had a couple other students with D and the nurse (there once a week) also has a child with D. That made me feel better.

    They also told me my daughters behavior is probably due to stress and I know she's angry right now too.

    So much to process and learn right now.
     
  2. danismom79

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    Are they limiting the number of test strips you get?
     
  3. Kaylas mom

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    We personally could never do 4 times a day. I just scanned Kayla's log book and she avg's anywhere from 6 to 12 times a day. 8 is her norm.
     
  4. Haleysmom2214

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    First off I am sorry. The first year is the roughest. We test a way lot more then 4 times. You have to test before meals and 2 hours post meal to know what is even going on with the food they eat. Bedtime test and depending a 2 am. If they are good you can get away with no 2 am. Haley is still very young is has had d for 5 years now, she doesnt know it any other way so I cant tell you about their additude. But d should never get in their way of doing anything.
     
  5. Christopher

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    What was their "logic" behind this advice?
     
  6. SarahKelly

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    Sounds like she's still really honeymooning. If it were me and my child I'd follow the advice only because I know that she'll be testing so much over her life that if she gets a kind of vacation from it than it's great. Of course I am sure if you see any patterns of excessive highs or lows than I'd test more, but 4 seems like a great number of sticks for a strong honeymooner that isn't experiencing extremes.
    Also, not to say it's okay, but I know a lot of teenagers and adult t1d that have been d for a long time and only test 3-5x's a day and have great HbA1Cs.
    Just my two cents :)
     
  7. hawkeyegirl

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    No endo is going to tell me how many times a day to check my child. Absurd.
     
  8. sam1nat2

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    I'd be upset about being told I'm testing too much!!

    At the same time, when Sam had his very strong, very long honeymoon, we never tested at night. It wasn't until he started pumping, and I found this forum, that we started tests at night.
     
  9. januaryblue

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    Considering I know very little about diabetes care I don't think it's absurd for the Endo or the CDE to give me guidance and tell me how to care for my d child, since I've never done it before...I thought that was what they were there for? I'm 4 days into giving insulin and am still learning, I'm grateful that I have them as a resource.

    Of course I'm a mother and will always go with my gut and if I feel she needs more testing then I will.

    We did the 2 am because the endo suggested it at the beginning.

    She's on very little insulin, and no fast acting so they felt this was a safe route I guess.
     
  10. Mimi

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    Any time we make a change to the Lantus we test overnight for a couple of nights to see the effects. Because it looks like your dd is in a strong honeymoon right now, once you know the Lantus is not dropping her overnight, you will probably be comfortable only doing night test if your day is out of the ordinary. (extra activity, weird day of bg#'s, insulin given late etc.)

    Enjoy the break while you've got it. :cwds:

    I think what the pp meant was that if you feel the need to test more, for your comfort sake and to learn from the numbers, then go ahead. The endo can only suggest...they are not doing this 24/7. However, don't get into the habit of testing just for the sake of testing. If you're not doing anything with the info then it is too many tests at this point.

    The first while is a HUGE adjustment. We all know. Hang in there! :cwds:
     
  11. hawkeyegirl

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    It's not absurd for them to give you advice. The particular advice that they gave you was absurd. If any medical provider told me that I should only test 4 times a day, I'd find a different one. Immediately.

    If you didn't want opinions on their advice, why did you post it?
     
  12. januaryblue

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    I get that! We do this 24/7, I just have no idea what I'm doing. LOL. If I didn't have the endo's I would be seriously lost. I can't wait until the day that I have more confidence in myself as a D caregiver. Although I do know that D is fickle. With my dad, I saw D, but I didn't really know it or understand it and I certainly didn't have any direct care responsiblilities. But I did see how fickle it could be.
     
  13. januaryblue

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    I don't mind advice, I was fine with that, I just don't have enough where with all in regards to D to snuff my endo's advice. I never said I didn't like your advice, was just trying to understand.

    And I've had some issues with the endos, but we are at UCSF, not bad endo's from what I hear. Some people drive hours and hours to go there. So I don't think I'll stop going there just yet...and I actually think I'll take there advice about testing less...but I'll ultimately listen to my gut too.
     
  14. Rukio

    Rukio Banned

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    ...isn't it dangerous not to test in the night?...
     
  15. kem25

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    That's a tough one. My heart goes out to you. I know your brain probably feels like an over-saturated sponge. I remember thinking 'I can't possibly hold any more information in my brain.' My son's 18 now, diagnosed when he was 12. Our endo has always told him he needed to test 4-6 times a day. Looking back, I wish we had tested more than that as a rule because now he has this '4-6' in his head and he doesn't think he should have to test any more than that. As another poster mentioned, some teens (like my son) sometimes have a hard time testing when they should, let alone how often their endo tells them. I would maybe cut back on a test or two and enjoy the little break, but I think it's best to over-test than to under-test. Call it good-habit insurance for the future.
     
  16. LARSMS

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    I wonder this too.

    I know that it is only when I began testing more frequently, including more frequently overnight, that I was able to spot patterns that were helpful in making insulin dose adjustments so it does seem a bit counterintuitive to me that you are being advised to test less. If you haven't already asked your endo why this is, then I would. I think asking these types of questions is what helps prepare you for being a better D manager.
     
  17. saxmaniac

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    <Broken record time for Scott>

    During a strong honeymoon, the BG can and should drop overnight - do not expect "flatness" when honeymooning. It's the absence of lows that you want to look for.
     
  18. januaryblue

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    They have us giving her 1 unit lantus in the morning and told us to give her the other 1 unit early evening around 5 so that it kicks in around 7 before she goes to bed. I'm not sure if I'm using the right terminology, but she said that would prevent night time lows, which she hasn't had on the 1.5 units. Her lowest time, for whatever reason is right before lunch. She dropped to the 60's twice, and that's why they were lowering her dose. Other then that they said her numbers were beautiful. And as for the night drop, I saw that. The other night we had pizza and she reached 244. I was afraid to give her a fast acting dose, which we had because it was late and I didn'y want her to go low. Sure enough by 2am she was 120, and I'm glad that I listened to my gut.
     
  19. Mimi

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    I agree. I don't think I worded correctly what I was trying to say.
     
  20. Lisa P.

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    I realize, January, that you are in a different place from most of us. My understanding is that you have caught this extremely early and your daughter still has largely functioning beta cells, so your case is probably a little different from that I've seen here before.

    But I have seen many posts here and had a fabulous pediatrician who recommended low numbers of tests each day early in our diagnosis. They simply didn't know what they were talking about. Honestly, if I had followed that advice my kid would have been in the hospital weekly, likely, and I think others here would say the same.

    I don't know from your OP whether the CDE and endo told you that you could reduce testing to 4 times a day or should reduce it. If they told you that you should reduce it and you have been testing far more than that, I'd agree with Hawkeyegirl, emphatically.

    I can handle a doctor or CDE giving me bad advice, or making a mistake. We all do that, they are human. But what I can't take time for is a medical professional who doesn't know what he doesn't know. That's really, really dangerous. If you can find a doctor who will tell you "I don't know the answer to that, I'll look it up" or "My best medical opinion is X, but if you believe that doesn't work for your family let's talk it out some more", cling to his white coat and never let go. :eek:
     

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