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Considering sending CGM back

Discussion in 'Parents of Children with Type 1' started by skyleysmom, Mar 29, 2014.

  1. skyleysmom

    skyleysmom Approved members

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    My DD has been using her new MM 530G since Tuesday and we are really struggling. After reading a lot of posts here, our own experience, and doing some other research, I am considering sending it back and looking into the Dexcom instead. No matter how often we calibrate, or how steady and in range her BS is, the monitor is still so inaccurate. I calibrated for her this morning and she was steady and in range. She just texted me that the CGM said she was at 64, but she was actually at 32! That is a big, scary difference! I checked the Medtronic website and the return policy says returns "should" be unopened. Does anyone have any experience with returning a pump that they have tried out that did not meet their needs? We have had the pump for more than 30 days, but that is only because the rep thought that our insurance had already approved it and sent it out in error and we held on to it until we were sure that insurance had covered it and then did the training. Now (after we were told insurance had ok'd the new pump) we received a bill for $1850 additional, after already paying a $870 copay, and when I phoned Medtronic they said that insurance was only covering 50%. I asked what they had covered with the last pump and she checked and said that they had covered half, but Medtronic had covered the other half. I told her that they had better figure out a way to cover the other half of this one too, because we never would have switched from her perfectly good pump if we had known that we would be paying more than $2700 out of pocket! I am very upset by this whole experience, and frustrated by the inaccuracy of this CGM!
     
  2. Mom264

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    I see three issues here.

    1. You are not satisfied with the performance of there 530G system despite your best efforts at calibrating, etc. Has the company offered you support? Have they tried to find out where the problem is so they can send a sent replacement, sensor, transmitter, pump? Have they offered you in person training? It is unacceptable that you are experiencing so many problems with no support. You dd is 16, so they have to support all aspects of this system.

    2. Second is whether you can return the system, past the 30 days if you want to do so mark and that sounds complicated. Perhaps a letter explaining your extenuating circumstances and asking for special consideration may be helpful.

    3. Third is only relevant if you decide to keep the system -- if you find the support you need so that it works for your child. This is the differential in what you anticipated paying for the system and what you are actually being asked to pay is enormous. I don't understand how you did not receive a reliable estimate. Was your dd on a mm pump before? Did you do the pathway program to upgrade?

    Sorry you are going through so much with this new system.

    ETA: this is your dd's first cgm. Do you think her JRA could be impacting the sensor? I read that JRA causes inflammation, but have yet to find any helpful information for you on what to do if it is impacting the sensor. Perhaps you can ask the endo.
    Just a thought.
     
    Last edited: Mar 29, 2014
  3. skyleysmom

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    Thanks for your reply, Mom264. We are definitely struggling with the calibrating. We were trained, and have called the woman who trained us, but all she ever says is more of what we have already been told about calibrating. It seems that this device is just very finicky and calibrating is difficult. Especially with a teenager, who's sugar is all over the place due to a combination of hormones and rebellion :wink: It seems so sensitive, We need to calibrate when her blood sugar is "stable" (LOL) No easy task at this stage of the game....


    It might be complicated returning it. Today has been a better day and I am planning to call Medtronic tomorrow to go on record that we are having a hard time and that we have had issues with regard to insurance and the timing and circumstances under which the pump was sent to us. We did not use the pathway program. She was using a medtronic pump and we were called by Medtronic when the new pump was available and the rep led us to believe that we would only be paying the copay. There is no way I'm going to send them an additional $1850! At this point I am not particularly thrilled about the $870 copay that I have already sent.

    This is her first CGM, her JRA has been in remission for 6 years (thank goodness) so I don't think it would be a consideration, but now that you mentioned it, I will bring it up at our next endo appt. on the 15th. Never hurts to ask!
     
  4. Ali

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    FWIW
    I have used a MM CGMS for many years. Sof Sensor and now the Enlites for six months. I get lousy lousy results for the first 24 hours of use with the Enlites. I just ignore for the first 24 hours. When I am able I may switch to Dexcom. But for now I ignore the first 24 hours and then it is pretty good but I still get some pretty erratic numbers. I am experienced in use of a CGMS but the Enlite is a bit wonky. Push MM to help you. Good luck. ali
     
  5. skyleysmom

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    Thanks, Ali. I spoke with a Dexcom rep today too. They might be able to help us. Haven't contacted MM yet. But I'm keeping record of all of the problems we have had. Riley's results have been pretty lousy non stop. I think she changes her sensor for the first time today. We will see if a new sensor makes a difference.
     
  6. TheLegoRef

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    A few tips on calibrating - we only calibrate if the total of the differences for the last four readings are less than 16, it has been 2 hours since insulin or food, and the pump shows no arrows next to the number. For the first part, say the readings are 100, 104, 102, 105. That would be a 4 + 2 + 3 = 9 pt difference. That helps us a lot with calibrating.

    Also, make sure you're only calibrating 2-4 times a day.

    We also consider sensors to be "trustworthy" if they're within 20 points up or down, and we always retest if the meter and the sensor are off by 50 points from each other.

    This isn't so much a tip as a clarification question - if the sensor said 64, why hadn't she tested already? Our low alarm goes off at 80, because the sensor might be off.

    Sometimes sensors just aren't trustworthy, either they were inserted not the best, or something else. Give it a try for a few sensors. It took us a while to get the hang of good calibrating and trusting the sensors.
     
  7. skyleysmom

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    Thank you, this is all really helpful info and advice. Her low alarm was set to 70 and she said she thinks the CGM has "missed" 70 and gone off at 64. I told her to make a note of it, if and when ever it did that. After reading your message, I told her to adjust the low alarm to 80. That makes a lot of sense. I really am terribly worried about her becoming less sensitive to lows.

    We just inserted our 2nd sensor and it went pretty well, the site actually looks tidier than the site we did with the lady who trained us! We will calibrate in 2 hours and see how we go. It seems such a challenge to get to that sweet spot for calibration! When you say the last 4 readings, are you talking about the last 4 readings on the meter, or on the CGM? Having 4 readings with the total difference being less than 16 on the meter seems virtually impossible, so I assume you mean the CGM, but I thought it best I ask! If it is on the CGM, you mean just watch it for a while and calculate the difference? I think it tests every 5 minutes, so if I understand you correctly, we would just check the CGM every 5 minutes for 20 and calculate the difference, correct?

    When the meter and sensor are off by 50 or more points after you retest, do you then recalibrate? What if it is off by that much after recalibrating more than 4 times in a day due to it being so inaccurate? Sorry to ask so many questions, I really didn't expect this CGM to be so confusing! I hope all of my questions make sense! Thank you again, this is really helpful and I am feeling more hopeful! :cwds:
     
  8. Ali

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    I was told with the Enlites and 530g pump to calibrate at least three times a day. That was a change from the Sof Sensors and pre 530g pump. Check with MM and see what they tell you. I get better results with at least three calibrations and fairly stable but I do not control as much as LegoRef does. As long as I am not rapidly going up or down in the 15 minutes before and I expect no rapid change for the next 10 to 15 minutes I get good results. It just takes the Enlites,for me, to get "wet" and stay constant about 24 hours. Ali
     
  9. skyleysmom

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    We were told to calibrate at least every 12 hours but not specifically how much was too much. I think we will shoot for 3x a day and see how we go.
     
  10. hawkeyegirl

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    You can scroll back and see prior readings on the CGM screen, using the down arrow. So you don't have to check it every 5 minutes to see the past 4 readings. You just scroll back and see if BG is reasonably steady.

    If it is more than 50 points off and you calibrate, you will get a "Calibration Error" alert. Two in a row, and it will tell you to change the sensor. What we would do when we used the MM sensor and it was giving level readings, but they were more than 50 points off, was to calibrate using a number that was 49 points in the "right" direction. So, if it was reading 200 and he was really 260, I might calibrate using 249. It will pull it closer without the dreaded calibration error. BUT, the problem with doing that is that with the old sensors at least, you could get good accuracy either in the high range or in the low, but not both. I usually preferred it to be accurate at low numbers, so I tried to avoid calibrating much if he was high. I'm not sure if they fixed that with the new sensors or not.

    There is a big learning curve with the MM CGM. We used it for 5 years and were pretty happy with it, but it took a long time to learn how to get the best results from it.

    ETA: Re: number of calibrations per day, I found that 4 was sort of the ideal number. It's been hard for me to get used to only calibrating the Dexcom twice a day, but it really does do better with fewer calibrations, especially on a sensor that is more than a couple of days old.
     
  11. TheLegoRef

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    Ask away! Someone will be able to answer. I thought it was very confusing at first too, but found a lot of tips. :)

    The last four readings from the sensor/cgm. :) And we don't glance at the cgm every 5 minutes, just when he's about to test, I ask him "what's the total of the last four readings" and he'll scroll back and read out the last four numbers.

    We calibrate at breakfast (well, first test of the day), then once during lunch/snack/dinner, then once at last test of the day at bedtime snack. Sometimes, that doesn't work, like if breakfast we can't calibrate, then he'll calibrate around 9am when it says "meter bg now" because it's been 12 hours. Sometimes, if he forgets to calibrate at lunch and snack, and dinner is running late, he'll calibrate at dinner but not bedtime snack, because if dinner is at 6:30pm, and he wakes and tests at 5:45am, that's within the 12 hour window. So there's wiggle room. :)

    We do sometimes calibrate more than that if the sensor is off by 50 points. We kind of call that "forcing a calibration", like if it has an arrow, and we shouldn't calibrate, but we feel we need to. If the sensor is off by more than 50 points, we don't calibrate, we retest first. If it is still 50 points off, then we will calibrate. But half the time, it's because the meter was wrong due to bad hand washing.

    Also, if the sensor is really "uppy downy" (like, has an up arrow for half an hour, then immediately a down arrow for half an hour, then back to up arrow, etc) and not a gentle flow, we know it's bad and will probably need to be changed within 12 hours.
     
  12. skyleysmom

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    Will you please come live with us for a month? :wink:
     
  13. TheLegoRef

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    LOL! I would love to get out of my crazy house for a month! :)

    You'll get the hang of it, I learned everything about our sensors and calibrating from here. I read sooo many threads in the CGM forum. I think I read some of them like ten times.
     
  14. tammy82

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    We too got disgusted with it years ago and gave up after a week. Its been sitting in a box ever since.
     
  15. skyleysmom

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    I am happy to report that Medtronic has approved our return! They are emailing us a prepaid label today :smile: It never got any easier for us. We finally gave up and turned the sensor off about a week ago. we are already working with Dexcom to get approval for their CGM. I am excited to get her started with Dex. I know it's not perfect, but I have heard so much positive feedback from Dex users and I think it will be a much better fit for us. Thank you for all of your support and advice!
     
  16. Sarah Maddie's Mom

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    That's good to hear! Hope all goes well with the G4.
     
  17. skyleysmom

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    Thanks, Sarah! I'm so excited! Just got off the phone with the guy from Diabetes Specialty Center and he says it looks like our insurance will cover the G4 100% so I will be getting my $870 copay back too!!!
     
  18. ChaosRules

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    Wow, you must have good insurance!! We paid a several hundred dollar copay for our G4!
     
  19. Sarah Maddie's Mom

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    You might want to head over to Tallygear http://www.tallygear.com/index.php?route=product/category&path=90 and pick up a case :) Maddie has the fabric one and attached it to a lanyard that she found on Etsy. She can stuff it in a pocket, lanyard hanging out, or keep it in her backpack, or hang it on a door knob.

    We failed miserably with the soft-sense MM system and have no complaints with the dex. It's just so much easier, more accurate, better range and best of all I can keep the receiver overnight and let her sleep. :wink: Hope it works as well for you guys!
     
  20. Brenda

    Brenda Junior Member

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    Since Marissa is an adult, I don't really know much about how the newer devices work. Is it possible to use the 530G w/o the Medtronic CGM? I thought the advantage of the system was that the CGM would tell the pump the user is low, which would cause the Low Threshold Suspend. Do you need to get a different pump, too? Does Medtronic still offer a stand alone pump? Just trying to understand.
     

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