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Teen daughter with new CGM

Discussion in 'Parents of Teens' started by skyleysmom, Mar 28, 2014.

  1. skyleysmom

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    It's been a long while since I actively posted here at CWD. This is my first post in the parents of teens forum and I think I need to check in here more often. I could really use some support from others who understand where we are. My daughter, Riley started using the MiniMed 530G CGM on Tuesday and it has been so difficult. I am kicking myself for just listening to the medtronic rep and not doing more research, I think because we were happy with her pump, I didn't realize that the CGM would be so complicated, and they certainly didn't tell me that when they called me to sell me on it. I wish I had checked in here before we went ahead and got the CGM. I feel foolish and now regretful. I posted in the main parents of children with type 1 forum yesterday and am now seeing that the MM CGM doesn't have the greatest feedback. I don't think there is much I can do about it now, other than move forward and try to understand this CGM. From what I am reading, dexcom would have been a much better choice, but I'm sure we are stuck with this new pump now that we have started using it. So there is my rant, here is where I need help... I am still, and always have been actively involved in Riley's care. I still test her blood nightly, when she is asleep. We wanted the CGM because she will be off to college in 2015 and the thought of her not being in the next room terrifies me. She is a teenager, and gets annoyed when I ask her her BS, what she ate, tell her to bolus, etc... But I still ask, and I still check. Her sugars have been all over the place lately, she's not eating regularly at school, she doesn't want breakfast and her A1C is 7 which is a little higher than it was when I had more control. Now I am telling her that we (she) really needs to measure food and focus on taking care of her D the way we did when she was first dx, not guessing at carb counts, and testing more often because we need to figure out the CGM, and the calibration is so difficult when her sugars are all over the place. I know she just wants to be a "normal" teenager and has always been very independent. It was a good thing when she was younger because she is very responsible and has always taken good care of herself, and back then she was more receptive to our input with regard to her diabetes, but now, she is rebelling a little bit and I'm struggling with trying to help her and respect her independence, while dealing with her teenage attitude. She is also very frustrated with the CGM. She told me today that she has really hated her diabetes for the last week and feels more like she has diabetes now than she did before the CGM. It breaks my heart. The last thing I wanted was to make her D harder on her than it already was. Sorry for this rambling, all over the place post. My mind is all over the place right now! Any advice and support would be so appreciated. :cwds:
     
  2. Sarah Maddie's Mom

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    Hi. Sorry things are so hard now. I also have a 16 year old and it's complicated, I know.

    Mine has the 723 Revel pump, the prior generation and we tried the MM cgm and failed. Not only was insertion a drag but we never got good accuracy and the adhesive or maybe the sensor metal irritated her skin. Additionally, while we thought integration was the way to go it turned out to be very annoying and stressful for me to always be asking to look at her pump to see what the graph looked like. After a few months we gave up.

    Fast forward to the G4 release and all the good reviews and I went back to our CDE and asked her to write a prescription for the dexcom. We went through all the reasons that the MM CGM failed for us - she submitted the prescription and insurance approved. In other words, you are not stuck with the MM system. Keep the pump and list all the reasons that the CGM system isn't working for you and try for the dexcom. Remember, the big expense in any CGM are the sensors - likely your insurance company won't really care if it's paying for one kind or the other. :wink:

    And last - a 7 A1c in a 16 year old is nothing to sneeze at. They have a lot going on. Weighing and measuring everything they eat just isn't practical for most kids. It sounds like she's doing really a great job a guessing carbs and remember, when she's at school she won't be weighing her food so she might as well be honing her estimating skills now. :cwds:

    Try for the dexcom, it's been great for us. :cwds:
     
  3. KatieSue

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    Mine's 18 and she just guesses on most everything these days. And she doesn't do such a bad job. I try to see what ideas she has to change things. She doesn't like breakfast either so for a couple of years I just made her have a glass of milk. They have a 15 min break about 10 and she'd eat something then. Now she's decided she likes a yogurt so she has that when she gets to school before class.

    Sorry the CGM is being such a hassle. We have the Dexcom and haven't had a lot of issues. Our compromise there is she takes a break between sensors. I too was worried about her being on her own for college.

    Are you past the 30 day window for return on the CGM (assuming there is such a thing). Maybe you can just return it.

    Sarah is right a 7 A1C for a teen is really good. Even if it's not exactly where you'd like it to be. Hang in there!
     
  4. skyleysmom

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    Thank you both so much for your encouraging words and advice! I am very proud of her and she has been pretty much guessing the carbs for the past few years and doing a great job. I'm just trying to figure out how to get this stupid thing calibrated correctly! The Dexcom sounds great. I am going to call Medtronic on Monday and tell them that we are not happy with the CGM and see where we can go from there. We have had it for longer than 30 days, but only because the rep sent it out in error before our insurance had actually approved the pump. So we held on to it for a few months waiting for approval. KatieSue~ When you say integration, you are referring to the pump and CGM being in one unit, right? Sorry, I'm still learning. With the dexcom, would Riley continue using her old MM pump (that we have not yet returned) and the CGM would be a separate unit that she would also have to carry on her person? Or is there a certain pump that it only works with? Is it wireless? Sorry for all the questions. I will sit down this afternoon and do some research. I really appreciate both of your replies :cwds:
     
  5. nanhsot

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    The teenage years are their own special brand of weird and for myself, I've learned to choose my battles wisely and force issues only when I must. If her guessing carbs works overall, then so be it. I have talked to many adults with T1 and quite honestly that's how lots of adults manage, they don't weigh and measure. My son is an expert guesser, it's almost eerie to me how instinctual he is with it. Every so often I'll challenge him and measure his plate, carefully counting or weighing, then have him tell me what his actual bolus was. He is ALWAYS spot on. He can even mentally factor in fats and activity.

    My son absolutely refuses to input carbs or BG into his pump. He's had CDE's, MDs, his mom, lol, pump reps, all try to convince him but he trusts his brain more than a pump. His A1C is in the 6's (though may go higher this next appt I think, it's been a tough semester for him) so I can't make a fuss.

    All this to say that if trust is earned and her guesswork is working, then leave it. I agree that a 7 at her age is awesome, with hormones and general teenagerness, that's a great place to be.

    My teenage motto is trust but verify. My son is off in college now so I understand your worries, I'm living them! But all we can do is give them the tools, the knowledge, and the ability. I'm really sorry that the CGM isn't working, hope you can get a refund on it, it sounds like the rep messed up and I'd push on that issue.

    My son uses his CGM only sporadically, it's one of those issues I am reluctant to push on. He'll put it on a week, verify basals, maybe use it when he has exams, that sort of thing. I'd love if he wore it all the time but this is his disease to own, so I'm just happy he uses it when he does.
     
  6. skyleysmom

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    Thanks, Nancy. I agree, I too choose my battles with Riley, it is such a difficult time for teens in general, let alone with diabetes! And yes, a A1C of 7 is noting to sneeze at :wink: She was actually a little over, and is now back down to 7 now, so I am pleased. I'm just more concerned about her counting carbs more accurately now, because we can't seem to get the calibration down with the new CGM and I'm trying to figure out what we need to do to help with her BS during calibration. Otherwise, I have been happy with her guessing and clearly, she is doing a pretty good job of it! But I keep hearing that she should ideally be stable and within "normal" BS range during calibration, and if she guesses wrong while we are trying to figure this out, and 2 hours later is high, or even worse, low and has to correct, there goes our opportunity to calibrate well. UGH!

    Does your son attend a college nearby, or is he in another state? We live in California, and my son attends college in NY. The thought of Riley going far away is terrifying! I know it doesn't matter if she is in NY or LA, night time is night time wherever they are. I just want her close by!

    I looked at the Medtronic return policy and it said it should be unopened. I am going to push that the rep messed up. I'm also upset because we paid our copay of $850 and recently got a bill for an additional $1850! When I called to inquire the rep that I spoke with said that insurance was only paying half and that Medtronic had picked up the other half on her last pump. I told her that Medtronic had better figure out how to pick up the other half on this one too and that it was still packaged and I could send it back. Now I wish I had! I have yet to hear back from them regarding that charge and now we have opened and started using the pump. Looks like I have my work cut out for me telephone-wise on Monday! We still have the old pump and if Medtronic wants Riley to keep using their pump at all, maybe they will be more willing to consider a return. I know they make plenty of money with the reservoirs and infusion sets! I also went to the Dexcom site and signed up for information. Fingers crossed :cwds:
     
  7. nanhsot

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    We live in Texas, so pretty much everything is far away! He's about 4 hours away from us, which is about right. Strangely I don't worry as much as I thought I would. He very quickly hooked up with 2 other T1 guys in his dorm and they are all good friends, considering an apartment together next year so he has a great support system as far as diabetes goes. He's had a rather stressful second semester with some depression/anxiety and I'm thinking his A1C is going to reflect that, but we'll see.

    I guess we're not as exact with the CGM as you guys are, or maybe Dex has different parameters as we never really worry so much about being stable or in range when calibrating. In fact he'll often calibrate when he is high or low to sort of lock in the numbers and let it learn.

    Good luck getting the return, I definitely think you need to play a little hardball about it since they rep clearly messed up. And if you owe them that much something is wrong altogether!
     
  8. skyleysmom

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    That is great that he connected with some other T1 guys! I hope Riley makes some connections with other kids with T1. So far she really hasn't :(

    That is just the problem! Apparently we HAVE to be more exact with the MM CGM! We have calibrated several times and I just texted with her and her GGM said she was at 64 and she was really at 32!!! I am getting so frustrated! I think the Dex is not as finicky! This thing really has been a nightmare. Our last calibration, I did myself this morning. She was in range and had no arrows going up or down and it is still that inaccurate! I mean, really, how exact do we need to be??!

    I'm calling Medtronic first thing Monday morning and I gearing up to play hardball!
     
  9. Sarah Maddie's Mom

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    To your earlier question about integration - MM is the only pump on the market in the US that is integrated with the CGM. So with that system the new MM pump displays the cgm graph on the pump. Two insertions but just one device. However, as much as we thought a separate CGM receiver was going to be a pain, it's actually working out so much better for us. 1. I can see it when she's home without bothering her. Most often it just sits on the kitchen counter where it picks her up through most of the house. 2. at school she just keeps the receiver in her pocket (it's very slim and small, in a fabric case on a lanyard) or in her backpack. and best of all 3. at night I keep it and deal with any highs or lows - I never once heard the integrated MM CGM at night, nor for that matter, did she.

    Rather than calling MM right off the bat maybe you should call your endo/CDE. What is MM going to do for you anyway? Take back the pump? Just try and convince you to stick with it? Maybe send you a few replacement sensors? The only interesting question they can answer is can you run their new pump without having the CGM function activated. I suspect so but maybe others will chime in. The person who can really help you is your endo/CDE and your insurance company. You'll need to make a compelling case other than "The cgm doesn't work" for us it was a combination of discomfort, inaccuracy and reaction to the adhesive. FWIW we've had no issues with the dexcom adhesive so they are obviously not the same.

    Short version - figure out what you want and then enlist help from your Dr to make it happen. MM is going to give you options that are best for them, not your kid so be careful how and when you approach them.

    Good luck!
     
  10. skyleysmom

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    Thanks, Sara. That was a really informative and helpful post. It didn't even occur to me that I could keep the receiver by my bed and not even bother her! She is already annoyed with me looking at her pump and I'm sure we would both like it if I could look at it without bothering her! How does Maddie do with the size of the transmitter? Where does she typically wear it?

    We are still on our first site, but she has said that the adhesive itches her and when she inserted, she said that she felt like she had been punched. You have given me a lot to think about and I think I will be more careful with how I approach MM, after reading your post. I do think I might call just to get on the record that we are not happy before more time passes, but I'll try to be nice :wink:. I will also contact our endo's office in the morning, or maybe I'll shoot her an email tonight. She works out of Children's Hospital Los Angeles, so it's not very easy to get a human on the phone! Riley has an appointment on the 15th so we can really go over what's going on at that time and see how she can help.
     
  11. MomofSweetOne

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    When you talk to Medtronic, be prepared that their CGM line has the WORST customer service of all the diabetes products I've dealt with thus far. They blame the parents for problems rather than working with you to solve the problem. We wasted six weeks of Lost Signals being blamed on taping problems when it was a transmitter problems. The Dexcom customer service is top notch. Only once have I had a bad experience, and I wonder if that person had transferred from Medtronic. You may have to move up a supervisor or two to even get someone to listen to you. I wouldn't waste much time talking to anyone lower.

    My daughter wears the Dexcom on her lower back. She likes it there because it's out of the way and doesn't get bumped. I rarely see problems from pressure on it. When she wears the pod, she prefers it on her arms, so this works. We get 1.5 to 2 weeks from the sensors and they barely leave a mark.

    I was torn between how much better Dexcom is and also wanting the LGS for my daughter when she gets a new pump in 1.5 years, but a friend who has worn it said that he turned off the LGS because having it shut off at 60 causes problems with basal. At a 60, I think the volumes on Dexcom would be better (I hope they'll wake my daughter!) than just letting the pump suspend.

    I had a friend who returned the Medtronic CGM and MySentry, but it was a major hassle and took months to get her money back.
     
    Last edited: Mar 30, 2014
  12. skyleysmom

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    Ugh! I am not looking forward to a fight, but I'm ready if I need to be. I'll roll up my sleeves and chat up a supervisor or 12! If they think I'm sending them another $1850 though, they've got another think coming!

    With all that I have heard about the Dexcom, at this point I have some serious CGM envy :wink: Riley had a better day today, but the calibration on the MM CGM just seems far too delicate for the likes of a teenager going through puberty and all of the other teenage stuff that prevents blood sugar from being "stable"

    I'm planning on making a call tomorrow to go on record. Thank you for your reply. I really (still) wish I had checked in here before getting the MM CGM. I'm sure if I had, I'd be singing a much different tune :cwds:
     

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