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Newly Diagnosed DD10

Discussion in 'Parents of Children with Type 1' started by kt_mom, Oct 17, 2013.

  1. kt_mom

    kt_mom Approved members

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    My DD was diagnosed on 9/22 so everything is still very new to us. At our most recent appointment the NP mentioned the CGM in passing and did explain further when we asked her about it but didn't really say anything about us getting one. And I didn't ask because this is all still fairly overwhelming and I was more focused on everything else.

    I've been reading some on here and trying to do a little research and it seems the CGM is a really good thing. But as far as getting one, I'm not really sure how that works.

    I signed up for a HDHP this year and with some prescriptions my husband had and now all the bills for DD we will meet our deductible and from what I can tell we may not be far off from meeting the annual out of pocket.

    I will be switching back to the PPO plan for next year. I'll pay more out of my paychecks, but I should save on the prescriptions. I've spent almost $1000 on test strips, lantus and supplies alone. Thank goodness I had a coupon for a free vial of Humalog (and glucagon) and the one we had from the hospital but next week when I fill the prescription for the novolog pens that will be at least another $300 for a 30 day supply unless the doctor bills clear and we meet the deductible.

    Anyway, I say all that to ask this. If we think we would be interested in a CGM where do we start and is it too soon? I have no idea how our insurance covers them or if it would be better to try for it this year since we've met the deductible or wait until next year when we are back on copays.

    I would appreciate any insight anyone has to share. We haven't even looked into pumps yet becuase the doctor said they like to wait a year first. But I will be looking into them as soon as they will agree to it for her.
     
  2. MomofSweetOne

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    Look at the Dexcom website. If you're interested, give them a call and they should be able to walk you through the process with insurance. Otherwise just call your dr. and they should be able to write a prescription that would start the process.

    We've been CGMing for 2 years, and I highly recommend it. It is a game changer and stress reliever.

    If you or your daughter are interested in pumping, there's no need to wait a year unless your insurance won't cover before then. Most companies will cover far before that and even before most endos. This is an area that you are the consumer & your doctor needs to make life with diabetes as easy for you as possible. If that means you prefer MDI (and my daughter did for a year) or pumping, they need to work with you to make your preference happen.
     
  3. DavidN

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    It is not too soon. I wish I had the G4 leaving the hospital. It is very easy to use and is a huge convenience and stress reducer.

    Call Dexcom and tell them you want the G4. They will tell you what to do. For us, it was a note from a doctor. If your doctor says "no", I would insist ... strongly. As for insurance, tell them your child can not feel their nighttime lows. The CGM is a medical necessity. The doctor sends over a script and boom, they overnight you the CGM. From idea to insertion, the whole process took us less than a week.

    It is definitely worth the effort. Good luck!
     
  4. MEVsmom

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    We have had ours about two weeks. My doctor's office just gave me the Dexcom rep's e-mail. I e-mailed him. He replied within in the hour with the forms. I e-mailed them back and the supply called me later that day to see what color I wanted. This was on a Friday and I received it UPS on the next Tuesday. I was shocked.

    Of course, this requires quick response from your doctor's office and no insurance issues, but I'd just call Dexcom and let them handle it.
     
  5. ksartain

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    We're going to get one in March after we hit our deductible. I can't wait!
     
  6. Mish

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    Welcome.

    If your nurse has mentioned it already, then I would run with it. It's really a game changer in diabetes care. I can only imagine what our life would have been like 8 years ago if we had it. It's really changing the way that we 'do' diabetes, in our house.

    Because your child is under 18, decom really won't talk to you (other than to tell you to print the documents online) So, start here: http://dexcom.com/customer-care/getting-started
    tell your nurse you're going to be filling out the doc, and have her get an Rx going for you. :)

    Good luck!
     
  7. greenpalm

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    My husband has had diabetes for14 years. My 7 year old daughter was diagnosed in March and started on the CGM after about a month. He was SO impressed with the info we got from hers that he dashed off to his endocrinologist and got one too.

    Her endo also told us we had to wait a year for a pump because that's what they "usually" do. I said, "I don't care what you usually do. I have one daughter and she is my daughter and what you do with any other patient means NOTHING to me. I'm only interested in MY daughter's treatment, and I want her to have a pump."

    She started the Ominpod in June and we love it. Her a1C at diagnosis was 11. At her next follow up it was 6.6. Since we started the pump it was 6.

    I will say the first few weeks on the pump were rough. It took us a while to get the settings right. It's NOT instant bliss.
     
  8. HBMom

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    Check out this website -I think you can get novalog pens for $25/fill??
    www.myflexpen.com
     
  9. kt_mom

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    Thanks everyone for all the great responses. I have to email DD's numbers in today to the doctor's office and I'll let them know that we want to check into the cgm.

    DD and I talked about it yesterday and she really wants one. She said it could be her Christmas present if it cost a lot. I would never make something like this her Christmas present, but it broke my heart becuase she is such a sweet thoughtful girl and I just hate this for her.

    We have already had to pay so much out of pocket and I have to refill test strips and insulin next week. But, I think we have met our deductible now so hopefully that should help some.

    I'm still not sure about the pump. Again, with cost being an issue I'm wondering if we wouldn't be better off to push it and get it this year since we have met the deductible. Even if we switch back to the PPO plan for next year, this is something thats part of your deductible, not your copay/prescriptions right?

    It's just so much to try to figure out. Of course I want her to have whatever is going to work the best for her and make this the easiest for her, but unfortunately cost is an issue. I guess I'll call and find out about the cgm first and take it from there.

    Thanks again for all the help!
     
  10. don04

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    kt_mom -

    Where are you located?

    My honest answer about insulin pump/CGM and billing are: Try it. IF you have hit deductibles and it will be covered at 100%, go for it. You can start the process, and if the costs are too high, you can stop at any time.

    An accurate CGM is a fantastic tool for managing. You are switching to a new insurance next year. You can call them now and ask what coverage is for CGM, Pump etc.

    Lastly, if your dr and nurse are not listening to your requests/wants, find a new one. One of my coworkers son's was diagnosed last year. He starting on a pump day 1, and was put into a study for CGM, so the CGM and supplies are covered under the study. Does your doctor participate in studies?

    Starting the process - Dexcom CGM website has all the forms to get started. The people at their 800 number are happy to help with whatever questions you have. The other manufacturers likewise know all the ins and outs to deal with getting this moving. Don't be afraid to call and ask for help.
     
  11. Christopher

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    The money/insurance part of it is for sure important. But another thing to consider is doing the CGM and the pump all at once, early on after being diagnosed may be a lot for your daughter to deal with. Then again, only you know her dispostion and her level of dealing with several things attached to her body at once. She may be fine with it. It is just another thing to consider.

    Good luck
     
    Last edited: Oct 18, 2013
  12. Sarah Maddie's Mom

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    It really depends on your plan. Ours treats pumps, pump supplies, cgm and cgm sensors as durable medical so there is no co-pay ( our plan doesn't have a deductible - though the premiums are quite high). Pumps run about $6000 - though the Omni-pod is less. Not sure what the retail price for the g4 is.

    I would start with the Durable Medical coverage for both plans. It might be smart to get the current plan to cover both. Say you go with the ping and the dex - in a years time you might decide that you want to switch to the new MM pump and integrated CGM - the new policy would cover the new pump (to the extent that it covers pumps) but if you wait till you are on the new plan you would be stuck with that pump choice for at least 4 years. A lot can change in 4 years.;)
     
  13. kt_mom

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    Thanks Don, we are located in Virginia. We BCBS of NC through my work. I switched to the HDHP because the PPO rates were going to double, and of course no one in our family ever gets sick :rolleyes:

    Right now we have only hit the deductible so we are at 20% coinsurance. I'm not sure if we are going to hit the max out of pocket or not. I've been following the claims online but I can't get it to add up to what they have at all.

    We have open enrollment in November and I will be switching back to the PPO. I think even with the higher monthly cost we'll save on the meds and stuff in the long run. DH now also has an expensive gout medicine ($500/90 day supply) so the copays for prescriptions are better for us.

    I printed the forms off the Dexcom website and sent the medical necessity one to the doctors office with her numbers this morning. The nurse said the NP would call me to discuss it. I plan to ask her about the pump then too. DD really wants both so I plan to push the issue with them if necessary. She's already done a great job of taking ownership of this. She does all her own blood sugar checks except at night and if she's low and shaky. She helps calculate her carbs/insulin and measures it out. She's a pretty responsible kid so I think that she would do well.
     
  14. kt_mom

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    Thanks, these are good points. The diagnosis itself has been a lot to take in and truthfully, she is still struggling a lot with it. Once we find out the costs and insurance coverage, its something we'll need to have a serious discussion with her about it.

    Right now she's set on having them. And I think that it will help in some ways and give her a little more freedom. But its a big commitment and not just an easy fix and we'll need to discuss that with her.


    I tried to call the insurance company yesterday but after sitting on hold for 30 minutes I had to hang up. I'll have to call back today and see what I can find out about the durable medical coverage and how much they cover.
     
  15. kt_mom

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    I talked to the insurance company and figured out exactly where we are in relation to the deductible and we have met it but we are about $3000 from meeting the max out of pocket.

    The diabetes supplies are durable medical covered at 80% since we've met the deductible. To be in network we have to go through edgepark to order them.

    I asked about next year and the PPO and she said they would still be durable medical. On the PPO plan if we join their healthy outcomes program they waive the deductible on diabetes supplies.

    So basically I can order them now at a cost of 20% or next year at the same cost. Our prescriptions are through caremark and she didn't know if any of the supplies could be ordered through them with a copay or not.
     
  16. kt_mom

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    I spoke to the NP today and she was not thrilled that we wanted to get the CGM. She said they've never put anyone on one so soon after diagnosis. She said she thinks its too much technology too soon and they wouldn't want dd focusing on those numbers all the time.

    I just want something to alert us to lows during the day at school/cheer practice and overnight so we I'm not afraid to sleep.

    She suggested we wait 3 or 4 months at least,and I told her that we thought DD could handle it, and that also we had met our deductible and now was a good time for us financially as well. She said she understood that and that she was also worried that since it hadn't even been a month since DD diagnosis that she might be denied and she didn't want that to happen.

    So I'm going to call the insurance company back again and see if I can get some more specifics on what they are going to ask for to cover it. Sunday we're going to the monthly meeting of a local Type1 support group and the topic happens to be CGM's so I'm hoping to arm myself with some more info. I think if I push her she will fill out the paperwork but she doesn't want to. I didn't even mention the pump at this point. It's going to have to be one battle at a time because she said upfront they want to wait a year for a pump.
     
  17. Megnyc

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    Honestly, if you can afford it I would get them both now. The fact that your daughter is eager to get started gives you a great opportunity to give her set up on a pump and cgm before puberty and all that craziness kicks in.

    As was stated above the dex is a total game-changer. Just as an example, last night I was about to go to bed and checked a BG which was 121. Great bedtime number, right? The dex had me at 127 double down arrows though. By the time I had grabbed some glucose tabs I was already in the 70s and still dropping. By treating it early on I didn't go below 60 and I was able to go to bed and know the dex would wake me up if I continued to drop. Without a CGM I would have had to stay up for at least an hour to keep testing. Personally, I would give up my pump before the dexcom.

    In terms of the pump I believe all the pump companies offer interest free payment plans. At 20% your portion would be around 1000 and for Medtronic at least you could just pay $50 a month for 20 months. That's what my parents have always done. I started pumping before I even left the hospital and I have really never looked back. I actually think the fact that I started pumping so early on makes the pump a normal part of diabetes to me. Kids are super adaptable and usually get used to the pump really quickly. And keep in mind if you get it and your daughter hates it (but I have never met anyone who hates pumping!), you can always put it away for a few months.
     
  18. kt_mom

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    Thanks that's very helpful! I had no idea they would work with you on payments. And your experience is a great example of what we are trying to work out for DD.

    We went to a local support group meeting yesterday and met some wonderful families that are also dealing with type 1. DD got to meet a couple of girls her age and one that was diagnosed just days before DD. We had to drag her to the meeting, she did not want to go. But she was very happy when we left and she had made some new friends that understand what she is going through. She also left with an even greater interest in the pump and the monitor.

    The woman that spent time with the kids while the parents met/talked said that DD opened up quickly and asked some great questions. Her was first was about lows overnight and passing out and no one knowing. I knew DD was worried about it, but she must be more worried then I thought to have asked someone she she just met. She is incredibly shy.

    I filled her prescription over the weekend to start on the flexpens and they were $0!! I thought they were going to be more like $400 and my order on edgepark for the test strips now shows $0 too. I talked to the HR person onsite at work this morning and found out that maintenance meds are $0 after you hit the deductible. What a huge blessing and relief. I was really stressing about filling these prescriptions and trying to fight for and pay for the monitor. Too bad the CGM isn't considered maintenance.
     
  19. missmakaliasmomma

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    I completely understand how cost is an issue. People can tell you all they want that you should get whatever you can, but you can't go into the poor house because of it.

    If I knew what I know now and could only pick one, I'd pick a CGM. The pump was a bust for us and my daughter's numbers are better back on mdi anyway. We're not cgm-ing yet, but from the experience I had with the pump, I'm sure I'll like Dex better. i feel like I can't like anything less than I did the pump.

    It seems like my issues with the pump weren't the norm though. People really love it. I unfortunately was not one of those people. If/ when they fix the issues that the new pods are having, I think we will try omnipod through the "cut the cord" program when it's available.

    One thing you have to consider is even though you met your deductible, you're going to continue to have to pay for supplies for the next year until you meet the deductible every year too. I am honestly not sure how much it is a month because we don't pay anything with our insurance but I always say that I don't know how people can afford this without good insurance. Everything is so expensive, it's a shame :(
     
  20. KatieSue

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    If financially it's a good time with deductibles I'd get both. You don't have to use them. If you find it's too much right now then you've already got them for a later time that might be better.
     

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