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How to convince Endo we need a CGM?

Discussion in 'Parents of Children with Type 1' started by Shopgirl2091, Apr 5, 2013.

  1. Shopgirl2091

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    My son is 4 and was only diagnosed in February, but I want to get started with the pump and CGM as soon as possible. I actually wanted to start the CGM first, but talking to our doctor she kind of blew me off saying that little kids really don't need them, and it really wasn't that important. I wanted to say "well, you're not the one who is losing sleep wondering about how your child is doing".

    She said that Dexcom isn't approved for kids under 12, which I knew, but there are still plenty of doctors that prescribe them. Is there anything that you have done to convince your doctor that you need one, or am I basically looking at having to get a new doctor?

    I don't want to be that overreacting parent, but I also want what is best for my child. With a very active 4 year old who doesn't show signs of hypo, or knowing how he is feeling at all I just want to be as prepared as I can. What are your thoughts? Should I just wait for a while and ask again in 3 months or be more proactive? Other than this one issue she is great, she even said we could get a pump as soon as we wanted too, I just wish we were on the same page with the CGM.
     
  2. Michelle'sMom

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  3. eveinthesky

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    Okay I'll give some insight on this. My daughter was recently put on the pump and we were using MDI for three years so there's that. Now with that being said I feel you. I was fine with her having MDI but what really bothered me was not knowing her glucose levels at all times. I figured I could easily know how many injections to give her if I knew her BG at a moments notice without having to prick her finger so much. It's hard to tell when her sugars dropping until it's in the 40s. Scary stuff. I never sleep right and I check her BG in the middle of the night. It seems like a good idea, but it's not. I'll give you my personal opinion and in no way is this medical advice, but hear me out. If you know at all times what his sugar is it might not help with understanding his illness. Sugars go up and in two hours a respectable level, but how will you handle all the corrections? Now that my girl has the pump it makes so much sense. I thought her A1C was great, but now I feel as though the lows would compensate for the highs and even it out. Now that's quite scary my friend, but with the pump that problem has decreased dramatically. I have better control over her diabetes. I wish I could really put in words what I'm trying to say...but it's not coming out as perfectly as I would like it to, but I hope you understand. Please let everything sit. I know you're scared, I'm always worried, but the more I understand her disease the better prepared I am and so will you.
     
    Last edited by a moderator: Apr 6, 2013
  4. nanhsot

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    My personal opinion? Don't ask. Tell. Research research research. Be educated to the point of educating HER. Know everything there is about CGM and go into the appointment and state: "I need a prescription for CGM." Have all the paperwork filled out for the specific item you want. Have everything but the signature ready. Tell, don't ask.

    I personally find that if I am armed with confidence, information and research, and if I approach it with the expectation that I WILL get what I ask for...they respect and honor your request.

    Be prepared to answer any/all questions (I even came in with the insurance code information, handed it to them so they couldn't say insurance may deny it), have an air of victory, and assume that you'll get your way.

    Works for me. Our endo office pretty well thinks we are a combo of crazy and wonderful.

    If you do not get a positive response to this approach. Yeah, I'd get a new MD. They work for you.
     
  5. nanhsot

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    Please forgive me, but I am honestly not sure what you are advising. Are you saying that getting a pump before CGM is preferable?? That is the "typical" way, but there is absolutely NOTHING wrong with wanting a CGM before pump, particularly in a young child.

    You have only had the pump, am I understanding correctly, not CGM? Until you have experience with both, it's hard to compare. I see many parents here who would easily give up pump well before CGM. I see many kids who love pump. It's not cut and dried by any means.

    Pump and CGM are both valueable tools. But each parent needs to look at their life, their management, and their knowledge and decide what most fits their needs at any given time.

    CGM vs pump....there is no right answer here. There is only what fits each family.

    And the statement "It seems like a good idea but it's not"...are you referring to night time checks? I think most if not all parents of young children here would disagree with that. I think night time checks in young children is essential, necessary, and just good management.
     
    Last edited by a moderator: Apr 6, 2013
  6. Michelle'sMom

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    I know of a peds endo, also T1, who thinks all CWDs should be equipped with CGM from dx. His view is that it's much easier to learn the effects of insulin/foods/activity when you can actually see what's going on, rather than rely on a single moment in time...ie fingersticks. I actually agree it would be much easier to learn with the assistance of a visual tool.
     
  7. momof2marchboys

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    I told our Endo that I wanted a CGM at our follow up appt after Dx b/c we had soo many highs and then lows that we didn't know he was that low b/c he can be 50 and act like nothing is wrong. She had no problem writing out the Rx for Medtronic Guardian. I had to show her the log book of the highs and lows and also had notes how he was acting at the time of high or low. Our insurance company also wanted the log book showing the major changes. I explained that due to his age he didn't understand the changes his body was going thru when going low and then bouncing high. I also told her that since we had met our deductible we wanted to get it sooner than later so it didn't cost us as much. I did the same thing once he started back on more insulin after his 6 month honeymoon to get a pump. I told them that I wanted the pump in our possession and insurance billed while his deductible was met - they said I need to take an all day class before I could get a pump - I finally talked the PA into letting us skip this class at their center and letting us do the basic pump class with the Medtronic rep and the medtronic training since we already had the CGM and we were familiar with parts of the product.

    I hope you are able to get one - it is nice to have on our son when he will let us put the sensor in
     
  8. MommaKat

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    This. Every last word of it. I'm curious, is your endo specifically a peds endo? Our first endo fought us on pump and cgm. Center policy was one year from Dx you could get the ball rolling for pump. We were proactive and got it rolling at 6 months. Ultimately, that meant my dd was pumping one year after Dx exactly. We planned to start CGM at the same time - something they were dead set against. They thought it would overwhelm us, but outside of getting used to having two things inserted it wouldn't have.

    Doctors can prescribe dexcom for kids. The difference is that Dexcom cannot initiate contact on your behalf - they have to have a letter of medical necessity and / or Rx before they can talk to you or take any further action.

    There's tons of research on the benefits of cgm for kids - pm me your email address and I'll send some of the articles I saved. Log religiously, download your meters regularly, and document hypos / hypo unawareness - both day and nighttime. It will help support your case.

    Keep in mind cgm is not reading blood glucose, but interstitial glucose or the fluid between cells. So, you're not really dosing off cgm, but the trend info you get, warnings of impending lows / highs are invaluable. (Yes, I know some here do dose off of cgm, but for someone new to this it's important to know that you are instructed not to dose off of cgm.)

    Personally, I wish we had started cgm (successfully) before starting pumping. My daughter is incredibly hypo-unaware, during the day and at night. Lows never wake her. I sleep more now that we have dexcom. It's not just a life saver for her, but sanity saving for me. Pumping was flat out scary sometimes relying only on finger sticks - but that's just us. When it comes to which cgm - everyone has their likes / dislikes, but I feel badly I subjected my kid to the harpoon of medtronic after experiencing dexcom's G4 sensor.

    Best of luck in this. Like Nancy said, if your endo won't listen or work with you, find a new one. You need someone who's going to support you in this journey.
     
  9. shannong

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    I can totally understand wanting a CGM right from the start. I think it is a matter of finding an endo that agrees with you too. Perhaps let the endo know again all your reasons for wanting one - lost sleep at night, hypo unawareness, lows that your child has had. Document everything and then ask them again. If they won't budge, I would go looking for a doctor that would write you the prescription.

    I think some endos (I know mine is like this) want to keep things "simple" for you in the beginning and don't want you to get started on too many things at once. But they really don't realize that it's the lack of control that can drive you nuts, and if there is technology out there that let's you get better control, than you sleep better as a parent.

    Good luck!!
     
  10. SandiT

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    I have been watching this thread with interest. My daughter's 3 month checkup is Monday. I intend to ask for both pump and cgm.

    My reasons, which I will give her, are as follows:

    1. It will make things safer. The majority of lows my daughter have are at school, and it's not that the teachers are negligent, it's that:

    a. She is one of 17 there... while to me she's one in a million. You know? So I tend to be watching her a lot more carefully.

    b. Even watching her carefully, she's often too busy at school to even notice she feels bad. So she's not telling them, "I think I need to be checked".

    2. It will make her more free. She will be able to visit her grandparents and they will feel more confident. She can spend hours at the neighbor's house without me running over to check on her (the only reason I do is because I KNOW she doesn't notice lows or highs!).

    3. On the subject of visiting grandparents, these will give them greater comfort and confidence. The grandparent relationship is very important, so them having the confidence to have her for overnights again will go far in helping her to feel normal again.

    4. The vast bulk of caring for a diabetic child falls on the parents.

    a. There is no positive reason for making that job harder.

    b. There is no benefit to us having to spend our day paranoid and afraid. This is not beneficial from a marital or parental standpoint. When you are under stress, you are neither a better partner nor a better parent.

    c. Having confidence in our ability to care for our child will make us better at both.

    5. Having confidence will open up other areas of our lives, as well. It's much easier to let your child play somewhere for an hour (like at a gym or hospital child care area) when you KNOW that you can say, "If this beeps, just give her two of these glucose tablets and call me."

    6. Sometimes even us parents get distracted and busy. When we do, the guilt we suffer can be enormous, even if everything turns out fine. A low of 55 might not kill our kid, but it is destructive to our confidence and our comfort in ourselves as parents.



    Part of the problem that I face is that my endo is crazy happy with my daughter's numbers. So I can't use that "clearly, I need better control, and that's the whole point of this--to help me get better control", even if I as a parent still want better control (I am not as 'fine' with those 60s as my endo is, lol).

    But what I DO want is less of a need to be so CONTROLLING. I check her sugars everytime I think she MIGHT be low. I check when I think she MIGHT be high... she has no clue the majority of the time.

    So the cgm makes it so that you can be more in control while being less controlling.

    7. Additionally, I can say with absolute certainty and confidence that K and I are old pros at the manual way. We've done it while out to eat, we've done it at school, we've done it in the car, we've done it pretty much everywhere a kid's allowed to go, lol. So making me keep doing isn't so I'll get better at it is pointless (and I can particularly say that with them being so happy with her numbers).




    Anyway, I really like what someone said about going in there and telling your endo. I will repeat what was said briefly by yet another person.... Your endo WORKS FOR YOU. You're not their employee taking care of their kid in between appointments... you are the parent, they are your employee.

    They're helping you and teaching you, but ultimately, you are the master of your child's future, not them. You chart the course within reason, not them. Their job is to tell you when someone isn't within reason, and to do so courteously and with enough explanation for you to make your own decision on it.
     
    Last edited: Apr 6, 2013
  11. Beach bum

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    The first thing to realize is that the endo works for you, you don't work for the endo. If you don't care for the endo's approach, by all means change. Many have done it here. Go back in to the endo and say you've done research, you've talked with people (we count as talking:)) and that you know of many kids who are under the age of 12 who have been prescribed a CGM and that you want one. Same with the pump, research, find out about the different ones and then ask for that.

    My daughter was diagnosed 7 years (almost 8)ago at age 4. We started pumping at 4.5. If the Dexcom was available during that time, I sure as heck would have started with that before the pump! It would have made me feel much better dropping her off at preschool and I know it would have been helpful for her teachers because she did not feel her lows at all. It would have given other care givers that extra layer of comfort, and would have just given us a little bit more secure feeling. I know it has given all of us more confidence in treating lows/highs by seeing the trends.
     
  12. Ronin1966

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    Hello:

    Point of information.

    Is it TRULY your child, (any diabetic) does not FEEL our lows, or that we lack the VOCABULARY, have insufficient experience with them starting out to be able to identify them... (sic. this is a low, I KNOW what this feeling is, now I've had a bunch).


    Extremely serious difference between these two creatures!
     
  13. SandiT

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    I think sometimes it's one and sometimes the other. Before I do her test, I ask her, "how does your body feel?" and ask her to do a body check.

    Sometimes she "feels fine, great!" and she's still 45... :eek:

    Other times she really wants to be tested because she's just SURE that she's low and she'll be right in range.


    I believe it's a lack of experience at her age (she's 6) and Dx timing (it's only been 3 months). It will take time for her to identify the differences, and I do think that sometimes she's just not really feeling it. The more excited or distracted she is by something she's doing or wants to do, the higher the likelihood that she's just not noticing anything (cause she wants to GO GO GO).

    Then again, this is a kid who will fall down the stairs, literally... and jump up and say, "I'm okay!" and run off back up to her room. Two hours later, you'll see a huge bark on her shin that took skin off... "Oh, that happened when I fell down the stairs".

    So I believe some kids just notice things more either physically or emotionally than others (and vice versa). And their excitement level or activity level can change the degree to which they notice things.

    Falling down the stairs when she's tired or upset is a class 1 catastrophe. When she's excited, looking forward to something, etc.; it's not even a blip on the radar.

    With little children, that's the way of life even if they're not diabetic. But when they're not diabetic, it's less frequently potentially life-threatening.

    Just my personal experience with kids in general.
     
  14. Darryl

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    Your endo is evidently ignorant of the reality of juvenile diabetes and why a CGM is beneficial to the health of any child of any age with juvenile diabetes. Even if your endo grants your request, this ignorance is not a good indicator of the overall care your child will receive. I'd interview some new endos and find one who recommends CGM's.
     
  15. hdm42

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    We love Dexcom! It has been invaluable in seeing trends and helping avoid many nasty lows and highs.

    Personally, I would go with a CGM before a pump. We've been using Dexcom for a little over a year, and we are just starting on a pump. The Dexcom is great in helping us transition to the pump and figure out the right basal settings.

    As the others said, the endo works for you. If you want a CGM or pump, do your research and tell (don't ask) the endo what you want. If the endo resists, ask for their reasoning. It may make sense, it may not. If not, push for what you want. If they still won't sign off on it, find a new endo.
     
  16. Shopgirl2091

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    Thank you! I tried to be as proactive as I could - I have been researching non-stop since diagnosis, I think I was just trying to be to nice. I just need to do what you said. She just acted like why would you want one of those, it wouldn't really do you any good, it isn't really necessary. It just drove me crazy! I will bring it up again at our next appointment, and if she shoots me down again we are definitely getting a new doctor.
     
  17. Shopgirl2091

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    I just PM'd you. Yes - she is a Peds endo, I actually think she is really good - but maybe she is just too old school and doesn't put to much stock in new things. She acted like even if he did have one I wouldn't be able to get him to wear it, or it wouldn't stay on. I have heard of problems with them falling off, but not enough that it wouldn't even be worth getting one.

    I have heard in my area though that Dexcom won't even talk to you if you have a young child because of the approval thing, they wait for the doctor to contact them - and mine didn't seem like she would. I will just have to push her on it and see what happens.
     
  18. Shopgirl2091

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    Exactly!!! I feel exactly the same way. Yes - my sons numbers have been great, I would say excellent so far - his first A1C was 6.7. Yes - he is still honeymooning, but he has LOWS!!! He still has HIGHS and it drives me crazy that I, as a parent don't have all the tools that could help me to better provide for him with this disease. I don't want to be a helicopter parent, but with a child who doesn't know how he is feeling, it is hard not to be. I am constantly watching him, wondering, is he going to pass out and I won't be prepared because he is acting fine seconds earlier! I just want to say please just give it to me!!!! I know how to take care of my child, we will continue to work hard to have great numbers and this will help us!

    I hope that things go better for you than they did for me. I will be continuing to research and back my argument up until our next appointment. I document everything so I could show them all the evidence that they need to see that he has lows, and often enough to warrant this. Please let me know how your appointment goes - I'm sending good vibes your way :)
     
  19. Lizzy731

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    Yes this is basically what we did. The endo was hesitant and giving us a hard time about putting her on a pump shortly after dx. We showed her all the research and basically proved that we know what the hell we are taking about.
    I ended up switching endo's shortly after she "gave in" to us. I didn't want to stick with someone who would argue with me about whats best for my daughter.
     
  20. Lizzy731

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    Totally agree with Darryl...exactly what we did after getting the pump. The new endo was proactive in wanting us to get a CGM about a year or so after pumping. We didn't bring it up....she did.
     

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