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Pump - or not?

Discussion in 'Parents of Children with Type 1' started by Junosmom, Nov 8, 2013.

  1. Junosmom

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    Ds was diagnosed 9/18/13. Based on numbers, he's still in the honeymoon period and also appears to be pre-puberty and not growing rapidly yet. We're doing okay, which I am well-advised is the calm before the storm of puberty.

    Although we are so new, we've hit our deductible for insurance on him because of the hospital bills. If we get a pump before the end of the year, it will cost us $900 less than it will when deductible not met later in next year. I am guessing this would be sometime late summer/early fall, assuming no hospitalizations. I'd also like, eventually, the CGM. Getting either/both is a stretch right now financially (two kids in college), but....

    Aside from ds's hope to have a pump and less injections, I'm thinking it would be better to learn to use the pump before puberty hits hard. Insurance doesn't require waiting period. Have called CDE for two days (no return call) to ask her opinion, endo's requirements. The CGM might let me sleep a little more :)

    So question is: Should I try to get it now, before he starts puberty? Am I correct in thinking there would be an advantage to that?

    Info on deductible included to show why I am thinking of it already, only 1.5 mos into his diagnosis. (He's 11 yo)

    Cathy
    William, dx 9/18/13
     
  2. nanhsot

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    Yes, get it now. We had a similar scenario, not really ready for pumping but insurance benefits to ordering before end of year. Our endo kindly pointed out that it doesn't have to go ON the body, it can sit on the shelf! Ordering does not mean you are forced into it, but financially I would make the leap now, then it'll be there when both of you are ready.

    Stay the course with your current regimen if that's the wise decision, but do your research and order it now, have it when it's time. That's what we did anyway. FTR, when it arrived, he realized he wanted to start right away and has never looked back!
     
  3. Sandy's mom

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    Yes, I would get it now. That is a lot of money you will save.

    I would contact the pump companies you are leaning toward and they will give you a local contact you can meet with and decide which you want. Usually they are very good at facilitating all you need to get one. They generally know the endos, ins and outs of insurance etc.

    Good luck!
     
  4. mamattorney

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    I agree with the others. No harm in taking advantage of insurance benefits. Do your research as to which one you and your son would like and go for it!

    You mentioned the cgm and, so I thought I'd pass on some unsolicited advice about cgm shopping from someone who's doing it right now . . .

    Neither the Dexcom G4 nor the new Medtronic pump/cgm combo are approved for 11 year olds. They can get one of course, as long as it is prescribed by their doctor and the doctor fills out a letter of medical necessity, but the cgm company cannot initiate any conversations with your doctor and they can't check into your insurance benefits until they have that letter of medical necessity to be able to provide the insurance company. Basically their hands are tied until your doctor says your child needs it.

    You said you are having trouble reaching the CDE, so I wanted to make sure you knew that, and if you are interested in a cgm, that you make sure to be very clear on that point with your medical provider so you can get that letter to Medtronic or Dexcom ASAP. Dexcom's website says the process might take 2 -3 weeks and there's only about 7 more weeks in 2013, so after your research process, you may be under the gun a bit.
     
  5. hawkeyegirl

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    This is good advice. I'm pretty adept at navigating the insurance/provider maze at this point, and it took us forevvvvvvvver to get our Dex earlier this summer. It seems to have been a result of laziness/incompetence on the part of most everyone involved, but it took us 2 months from the time I started the process until it was in my hot little hand.
     
  6. MEVsmom

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    That was not the case with us. I casually asked our CDE about getting a CGM. She just gave me the Dexcom rep's e-mail. I e-mailed him on Friday and he sent me a form to sign to give them permission to contact everyone and then he took it from there. He contacted the Dr. to get the letter of medical necessity, contacted insurance and contacted the supply company. The company called me to see what color we wanted and I had it by Tuesday. The doctor's office was aware the request was coming, but by no means typed up the letter of medical necessity first.
     
  7. hawkeyegirl

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    I don't disbelieve you, but that's not the way it's supposed to work, and Dexcom can get in big trouble with the FDA for doing that. They are not supposed to contact your endo, your insurance company, or you until they get the prescription from your endo. Once that is done, yes. They will take the ball and run with it (or in our experience, limp slowly with it :rolleyes:), but they need that prescription before they are allowed by the FDA to do anything else.
     
  8. Mish

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    Even if your endo isn't keen on him starting a pump right now, or even if you don't feel like this soon is right, there's no reason not to order it now. You can start whenever you want.

    Just tell your endo or your CDE your reasons. Money does come into play in these decisions for most of us, and if you can save $900, then do it.

    (also, I wanted to note.. our kids share a diaversary ,9/18. It's like noticing someone shares your birthday. :cwds:)
     
  9. missmakaliasmomma

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    I think it's a good idea to start now. At least with one or the other if you can't swing both. I definitely want to pump again when my daughter gets to that age because I'm pretty scared of what puberty will bring.
     
  10. Junosmom

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    Thank you

    Finally talked to the CDE today. She invited me to a pump class next week where they show you all the pumps and teach about pumping.

    Was kind of shocked though - she said that pumps cost about $7000. Somewhere, maybe too old of a thread, I thought it said $5000. Durable medical equipment cap is $4000, so my portion $3000. Don't know if we can swing that with hospital bill still to be paid. Need to see it all in writing, but gee...

    Wording of benefits say:
    limited to $4,000 per calendar year for non-essential, medically necessary Durable Medical Equipment.

    Interesting, because I would think things medically necessary ARE essential, no? Help in understanding this, pls? Will also call insurance again.

    CGM: The CDE said we can't get one. Said that it has to be "medically necessary" and if he isn't experiencing a lot of lows (and he's not yet), they won't prescribe.

    Not giving up hope yet, and wondering what I can sell ;) This is an expensive disease! Thanks for being there!
     
  11. Sarah Maddie's Mom

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    I realize that your question regarding pumping is time sensitive, so in terms of managing your insurance benefit this isn't much help but I must say that if my CDE said that to me, I'd be looking for a new practice.

    There are dozens of reasons why pumping might be medically necessary that do not concern lows. For an 11 year old with developing independence "compliance" with care would be one, ease of care while at school might be another, variant basal needs in a pre-pubescent kid another, anxiety about giving self injections another, the omission of insulin in the presence of friends and so on and so on and so on. The CDE's job is about managing the disease in the WHOLE child, not just crunching the numbers. Any CDE who was unwilling or unable to finesse the system in order to meet a patients needs isn't, imho, fulfilling her professional responsibility.
     
  12. Mish

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    If I read the op correctly, pumping is a go, but CGM is not. :)

    However, to the OP, I also think that CGM is not just for low detection. There are a bunch of other reasons (puberty being a big one) why a CGM is helpful. Our issue is highs, not lows, and and I find the CGM invaluable in helping manage those.
     
  13. Junosmom

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    OP here. Yes, it is the CGM that she said I couldn't qualify for.
     
  14. nanhsot

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    I'm sure this depends on provider, but we were able to get an interest free payment plan for the amount (~2000) we owed.

    As far as CGM, I'd keep pushing. So they want to wait until he IS having problems to get a system to help prevent? Brilliant. If they word things correctly he can qualify.
     
  15. Sarah Maddie's Mom

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    Ooops :eek: missed that rather critical fact :p
     
  16. mamattorney

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    Not to hijack the OP's thread, but I was just told today that the cgm letter of medical necessity my nurse practitioner sent to dexcom (which I basically filled out for her) won't get approved as is.

    She is going to send it back to the doctor's office with recommendations as to which boxes need to be checked to get it approved.

    I emailed the nurse with this information, telling her to expect the fax and said if she felt uncomfortable checking the "correct" symptom boxes to let me know and we could discuss it.

    The insurance company hasn't seen it yet - dexcom just knows by now not to send it in as is. She didn't share with me what changes need to be made, but I will probably find out next week.

    I'm sure it has something to do with lows. My daughter doesn't have a slew of "low" lows. She's feels her lows when she's awake and catches them before they get too low. And we make sure she starts out in the triple digits at night and right now I'm much more concerned with highs than lows. Apparently Blue Cross Blue Shield is not. Hopefully, it won't be too much of a stretch to check the right boxes and get this thing going.
     
  17. KatieSue

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    We had the same issues as Mamattorney. The Endo's office weren't checking the right boxes to get the paperwork through insurance. But my kiddo did start having these weird drops into the 30's she didn't feel. As long as we had those documented then the docs were willing to change their box checking.
     
  18. MomofSweetOne

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    Does she wake for lows? If not, that alone will get her qualified and it's something that should concern you with puberty. Girls' hormones cause basals to spike HIGH to drop LOW with short periods of time. I'm talking...within the last 3 days, my daughter has run on 200% of profile to 50% of profile and now is currently at 120%. It's lots of fun:( and I can't imagine how awful she would feel without the CGM to help us adjust to what she needs. Even with the drop to 50% basal at bedtime and 2 juice boxes to prevent a low last night, the CGM still caught a 54 fast drop at 12:30 a.m. The alarm would have been set for 2:30 and missed it.
     
    Last edited: Nov 8, 2013
  19. mamattorney

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    She doesn't wake to lows, but the lowest BG she's had in the past 30 days was 59. I wonder if that's why. Her lows aren't low enough? To be honest, I've spent the last 30 days trying to get the kid into the 100's overnight, not all that concerned with her dipping into the 40's, but I'm sure this is just the tip of the iceberg in terms of crazy numbers. I could reach back further for some lower numbers if needed. So silly. I'm sure I'll find out next week. Lisa was all for ordering it, so I think she'll work with me.
     
  20. MomofSweetOne

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    I remember being told that if we weren't seeing under 55s, we wouldn't be able to get CGM approved (I think it was Dexcom that said that!) but we had no hassles at all with ordering either system. We had one year of experience at that point of my daughter never having woken to lows that I was catching with BG checks, sometimes every 2 hours as I reduced Lantus nightly at one point. The key words are nocturnal hypoglycemic unawareness.
     

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