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pediatric endo's feedback to D teen

Discussion in 'Parents of Children with Type 1' started by C6H12O6, Sep 16, 2015.

  1. C6H12O6

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    I don't see the point of the first "goal."
     

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  2. Michelle'sMom

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    Looks too much like a report card to me.

    At every visit over the last 3 yrs, the endo or CDE (sometimes both) have commented on how much my dd checks (avg according to meter is always 7 or 8 Xs per day). Apparently we are way above the norm. One or the other, & sometimes both, also point out that there's really no need for overnight checks. I nod & smile & we keep doing our thing.
     
  3. DiabetesMama

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    I think that if things are going great, which they look like they are, why tell you to change? I think that is awesome that you have such good numbers and that's what they should be saying instead of harping on how many times you all test. Ours did the same thing two appointments ago... "Well, your numbers are great, but you know that you shouldn't be watching like a hawk. His numbers aren't always gonna be in range because eventually he is going to be out of the honeymoon phase and they are going to go up." And I love this one, "Don't worry about keeping his fasting bg down below 100 because once he is out of honeymoon, it's gonna be near impossible..." Ok, shouldn't you just rejoice with your patient and the parent for all their hard work, praise the child for doing so well with this disease that they DIDN'T ask for? THEY were the ones who told us that they wanted the fasting bg to be around 100, so now I am getting fussed at because I actually followed your instructions? I totally feel you!!! We have had some similar appointments. Just keep your head up and know you are doing a great job!!! Hugs and congrats on your awesome numbers!!!:triumphant:
     
  4. Mimikins

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    O_O NOOO! Things from my nursing class are popping up everywhere! We were talking about integrating the LEARN model, goals, and objectives yesterday.

    Part of me is surprised that they added that goal with (what I assume to be) no discussion about it. It feels like they tried to acknowledge your habit of night time testing, but there seems to be no explanation of why they want you to test less overnight (and no subsequent negotiation of their recommended goal to test overnight once a week). One of the first things my class discussed is "noncompliance" vs. our goals not successfully being applicable to the patient, and the "test less overnight" goal is a really good example of it. You probably view night time testing as important and have no intentions of changing it, so having the diabetes team develop that goal would be unrealistic.

    During one of my first appointments with the CDE, she had "eat cookies" as one of my goals (she is awesome). During our visit, she noticed that I was starting to become overwhelmed with my treatment and "eating right for my diabetes" and was starting to miss out on some of the traditions my family has during the holidays in attempt to become the "perfect diabetic." Yes, eating cookies is not a normal goal, but that goal was a good reminder of our discussions about me continuing to live my life like I was prior to my diagnosis, and that being able to have those treats would help minimize the risks of diabetes burnout later on.
     
  5. mom24grlz

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    our endocrinologist team started a "goal" thing too. We've pretty much told them we dont' want to set goals. I'd ignore the testing in the middle of the night goal, unless you want to stop. Our endocrinologist used to try and convince us that Ashleigh didn't need night testing. I pretty much told them that i was the parent, they weren't and i will test her at night. She is hypoglycemic unaware! Last night i caught a 59 at 1AM; according to the dexcom she had been low for over an hour! She is also a heavy sleeper and sleeps right through her dexcom alarms (and i can't hear the dexcom from my room).
     
  6. DiabetesMama

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    I know this sounds crazy, but have you thought of buying a baby monitor? We bought the cheapest one we could find at Wal-Mart ($15.00). That's what we did because like you, I couldn't hear the alarms either and my son also sleeps through them. He has a bunk bed so I used a Command strip and hung it right above his head and I had Dex hanging right it front of the monitor so I know I can hear it. I am having to design a new "hang" system because he has knocked Dex off a few times during the night, so I am working on that. It has helped out immensely! I am glad you followed your gut and tested her! The things we "moms and dads" come up with to overcome and adapt! :welcoming:
     
  7. Sarah Maddie's Mom

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    It's possible that this is a product of the new and vastly expanded medical billing code system that is about to, or just has, gone into effect. Endos may need to do more documenting "progress" and plans of "action".
     
  8. Christopher

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    If you have a CGM why are you testing during the night?

    Without knowing how many times you are testing overnight it is hard to answer your question, but maybe they believe (right or wrong) that since you have a decent A1c, that you don't need to test as often as you are? Or maybe they believe that since you have a CGM that you are testing too often? Hard to say without all the facts.
     
  9. Christopher

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    If you have had a CGM for the past 3 years, I am just curious why your daughter is testing 7 or 8 times a day?

    I am not being nosey, just curious because I am new to CGMing and one of the nice things has been NOT testing 7 or 8 times a day like I have been for the past 8 years.
     
  10. Michelle'sMom

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    Actually, we've been using Dex for 5 yrs. We started with the 7+, then switched to the G4 in November after its release.

    The simple answer: we check as often as we need to in order to maintain her A1c. More specifically, we don't see the accuracy with the G4 that many people do. I'm not sure why, & no one I've spoken with about it has an explanation, other than it's just not a fit for everyone. We're able to use the trending for basal changes, but I would never trust it for dosing or even monitoring during activity. There are times when it's incredibly accurate, but I've seen enough discrepancies to know it isn't reliable for us.

    After a particularly snarky NP tried to tell us no one should ever have to check more than 4 times per day...ever, I decided to prove her wrong. And I was successful. We cut back to pre-meal & before driving only...4 checks per day. Her A1c was the highest since dx, & we went back to our normal checking routine. A good example of why no endo/CDE should be making recommendations about when/how often to check, unless they have reason to believe there's an issue with fixation on checking or causing rebellion in the child.
     
  11. mom24grlz

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    i did think of it, and suggested it to my daughter. Who was appalled i'd even consider invading her privacy (and really i don't want to hear her and her boyfriend talking). I also thought about getting nightscout or Share. But i don't know if it's possible to only use those at night. I don't need to look at her numbers while at school or work, because other than worry about them what good will it do me. I'd never call her during work and tell her to take care of her blood sugar or call her at school.
     
  12. mom24grlz

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    same here. We dont have good accuracy with the dexcom. heck we even had dexcom confirm with us, that Ashleigh's accuracy is less than what they like. I think they claim 80% accuracy, and Ashleigh's is less than that. Ashleigh checks her sugar around 8 times a day.
     
  13. Michelle'sMom

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    We tried a baby monitor when we first started Dexcom. It lasted about a month. She was 12, so privacy concerns weren't a big deal, but the constant noise from the monitor was...for me. Now that she's 17, Nightscout or even Share would be too invasive, & not worth the stress.
     
  14. Christopher

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    I see. I'm sorry to hear that.
     
  15. Christopher

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    You can absolutely use the Share at any time you like. It can be disabled when you don't want to use it.
     
  16. funnygrl

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    I'm in my 20's and I have two people that follow me on Share... I don't think they ever look at it unless it alarms and they both only have the <55 alarm on.
     
  17. forHisglory

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    Absolutely true here as well. The Dex lags behind "catching up" after a low for at least 30-45 minutes, sometimes more. Last night, we caught an early low at 80 as he was drifting off to sleep. Decided to treat with a small 8 carbs. 45 minutes later he was only 93 according to Dex. Treated with another 8. Still only 96 another 30 minutes later........can't be right.......meter confirmed he was 250 and going up. Yep, messed us up. Should have just used the meter. We test 8-10 times a day and more if he's very active. Dex is best for trends and adjusting basal when things are stable.

    P.S. I should also add that sometimes we actually test MORE because we have the Dexcom. Like the other night when it alerted us that DS was at 56 one arrow down. Boy, that got us awake and moving fast. Tested and he was actually 163. False alarms at night are common.......but what are ya gonna do......ignore it and fall back asleep?? Sometimes, Dex is correct! Although, we should have known from checking SHARE most of the night that he was 160ish about 1.5 hours ago. Still, the whole "D is unpredictable" makes it hard to ever rest easy for long.
     
    Last edited: Sep 16, 2015
  18. C6H12O6

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    just to clarify the paper is not addressed to me. I just think it's a funny goal.
     
  19. Megnyc

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    I'm 21 and I just gave my boyfriend access to Share today. He is the first person I have given access to. He has access on a trial basis mainly so I can see how I feel about it and if it annoys me less than him picking up my dexcom (when he thinks I am sleeping and is concerned) to look at it. I would never in a million years give my parents access. I would not have given them access during college either.
     
  20. Wren

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    Goal 2 seems to be missing the implied, "because if your a1c were to be higher than x, you would stop being completely awesome".
     

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