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quotes from Darryl CGMS

Discussion in 'Continuous Glucose Sensing' started by fredntan2, Jun 15, 2009.

  1. fredntan2

    fredntan2 Approved members

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    Darryl, I hope you don't mind, but I've searched your threads and am compiling some of your posts about cgms. I find them very informative.
    I'm starting my dd on dexcom this week.
    anyone else feel free to add any informative posts about starting cgms. I want this experience to be positive.
    thanks for all the info Darryl.

     
  2. Darryl

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    Fran,

    Thanks for putting those together in one post.

    I just want to add that it becomes more evident to us all the time how important Apidra is with CGM use. The fast action time allows us to make corrections frequently enough to "close the loop" and get BG under control in even the most difficult situations we've encountered so far. Looking back, it was much harder when DIA was 3 hours using Humalog.
     
  3. Ali

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    Darryl
    Do you actually find the Apidra action to be done in two hours? I have just switched from Novolog to Apidra and found they both start for me in 15 minutes-the Apidra just starts stronger than the Novolog, peaks at one hour 15 minutes, lasts three hours with most of the action done in two hours. The Novolog peaked at one and 1/2 hours,was mainly done by three but not really done for five. I almost always bolus 1.8 units or less with both insulins so already have minimal insulin amounts. I prebolus 20 minutes with Nov. but am learning to not prebolus more than 15 minutes with the Apidra. My I to C ratios have dropped (i.e. I need less insulin per carb), my sensitivity ratios increased (one unit of insulin drops my BG more) and my basals are being worked and tweaked out. It is a different animal for me than any other insulin and yes it does work better (more insulin action at the one hour to one and 1/2 hour mark) and for me or at least more closely matches my food peaks. Thanks for any insights into what you have found per Apidra.:) Ali
     
  4. Darryl

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    Ali,

    People report widely varying results, but in our case...

    After bolusing with Apidra (using the omnipod) her BG begins to drop on the CGM display at 35 minutes. This means it is actually working in around 20 minutes. At 75 minutes, the action is complete as shown on the CGM, meaning the DIA is actually 1 hour. With this, she can make corrections hourly with no insulin stacking. With humalog the BG did not begin to drop on the CGM until 2 hours, and we were never quite sure how long the DIA was because by the time it's 2-3 hours out, she usually would have eaten something or had a drift in BG that would obscure the endpoint.
     
  5. Jacob'sDad

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    Darry, I can see how the DIA could be that short when correcting BG because the boluses are usually quite small, but do you also find the DIA to be that short when bolusing for meals??? I mean the food isn't nearly done digesting in one hour is it? If the Apidra was done in one hour it would finish way before the food in most situations wouldn't it?

    I COULD see how the BG could flatten out one hour after a meal if the Apidra and the food were absorbing in close unison which is always the ideal goal, but just because BG is more or less flat doesn't mean the Apidra isn't still absorbing. It is just working in time with the food digestion.
     
  6. Ali

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    Ali here again. When I said the Apidra begins to work in 15 and the Novolog in 15 that is when I see a drop in my BG begin. The Novolog just started dropping BG at a slower rate than Apidra so I had more wiggle room with starting my meals or snack. Ali
     
  7. Ellen

    Ellen Senior Member

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    All the time?
     
  8. mmgirls

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    Does she not spike past 100 at meals? or since you know she just ate you expect it but ignore?
     
  9. Darryl

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    Yes, 24/7. Until you try it and learn to "steer" within that range, it may not be obvious that this results in fewer alarms and easier control than setting a wider range.

    For the simple reason that if we let her BG get, say, to 140 before correcting, we'd be programming a 50 point correction to get back to 90, which has more chance for error than a 12 point correction from a 102.

    Of course on the more difficult days we can't keep the BG within that range all the time, but reacting as soon as it crosses 80 (with 1 or 2 carbs) or 100 (with tenths of a unit) results in smaller and more accurate corrections vs. waiting until BG is well out of non-D range and being forced to do larger corrections and then deal with overcorrections and undercorrections (i.e., the rollercoaster).
     
  10. Darryl

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    We don't correct within 90 minutes after a meal unless it appears that a correction is needed (i.e., if 90 minutes later, BG is rising rather than falling back towards her BG target of 90, then we give a correction).
     
  11. Darryl

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    Yes and no - after meals, it could take 2 hours for BG to return all the way to baseline. However, at 1 hour we can see where things are headed. By 1 hour, BG is usually flat, and by 90 minutes, it should be dropping towards baseline. If BG is still rising at 90 minutes, then we will give additional bolus and increase basal.
     
  12. Ellen

    Ellen Senior Member

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    Darryl, I believe you have your daughter's physical health foremost in your mind. I applaud your knowledge of how the CGM works, how insulin works, and how the pump works. You have what seems to be an engineer's grasp of so many aspects of insulin therapy. However, I want to share my concerns in response, and provide a bit of balance to this discussion.

    FWIW, I believe nanomanaging on this scale has potential for considerable detrimental psychological outcomes. I would like anyone on these forums who thinks they are not doing it as well as what is being brought up here, to know this is not what is recommended. I'd like to see any peer reviewed medical literature that supports a child keeping the alarms between 80-100 24/7
    and a level of acceptance to have an alarm each hour
    . If YOU need sleep you widen the alarms? I personally would not do this to my child. I do not want my child to be reminded of diabetes every hour. Let alone every 30 minutes
    when you snooze the alarms.

    But you can't keep bg between 80-100 at all times, your child has type 1 diabetes and the pump and cgm are not perfect and putting so much pressure with the goal of perfectionism may set her up for an eating disorder as well as other psychological disorders in the future.

    What happens if it does? What are the internal psychological ramifications of disappointing daddy? What's the rule for no blood sugar under ____? Are "mild" hypos less important than excursions to 150 mg/dL?

    Your goal of 80-100 is below non-D range. You don't achieve this goal. And your daughter has diabetes.

    To me this is so unduly burdensome. When does she get a chance to NOT think about having diabetes? Is she entitled to hours of carefree play when feeling well not to think about diabetes? She's a little girl. Do ANY health care providers, CGM/pump researchers support this level of human nanomanaging in a child?

    . As a parent, it's incomprehensible to me to think of an 11 year old being concerned about a 12 point correction from a 102 mg/dL bg to get back to 90 mg/dL, instead of simply being fully focused and involved in an activity that is joyous without having to think about diabetes.


    Another:
    IMO constantly thinking about, looking at, blood glucose numbers, interferes with getting on with life.

    While the DCCT had compelling evidence of support for tight control, I wonder if you have consulted Dr. Stuart Brink about his opinion of how you are approaching "control".

    From Dr. Wolpert's most recent book Transitions in Care: Meeting the Challenges of type 1 Diabetes in Young Adults a couple of quotes I'd like you to consider.

    P. 9 - "The young adult who as a child faced unrealistic expectations for self-care behavior and glucose control and had a legacy of punitive and judgmental medical encounters is especially vulnerable to 'diabetes burnout,' a condition characterized by feelings of inadequacy or guilt from chronically failing at diabetes management."

    I don't believe you are being punitive, but I do think there's an underlying current of judgment about high blood sugar in your philosophy and there are very UNrealistic goals set forth based on alarms between 80-100 mg/dL and the stress to getting back to 90 mg/dL which can lead to "feelings of inadequacy or guilt from chronically failing" to be in that range. Remember, an 11 year old thinks very differently than an adult and internalizes messages differently than you may realize.

    p. 83 "Although improved glycemic control may be the therapeutic endpoint, the focus in care should not be directed exclusively around blood glucose management but should also be framed in terms of making the diabetes more manageable."

    p. 87 The Facts...recent research has shown that young women with diabetes have 2.4 times the risk of developing an eating disorder than age-matched women without diabetes (Jones et al. 2000)

    p. 88 two points from How to reduce the risk of disordered eating in young adult patients
    Negotiate realistic blood glucose level, weight, and behavioral goals with patients
    Avoid perfectionism


    Respectfully,
    Ellen
     
    Last edited: Jun 19, 2009
  13. frizzyrazzy

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    Thank you Ellen for saying this. And I agree, while I believe that Darryl has his child's best interest at heart, I wonder sometimes if new parents to pumping/cgm come here and read his way of managing and think that this is something that is recommended and even attainable for most people. Mostly, I worry that another child/parent team, perhaps a child who is not as well adjusted as Leah with parents who are punitive, will read this and try this method and wonder why everything is not working as it should.
     
  14. Nancy in VA

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    I agree 1000% with Ellen.
     
  15. hawkeyegirl

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    I find it a bit presumptous to make judgments about what is mentally healthy for someone ELSE'S child. Darryl's regime would not work in our house for about 1,000 reasons, but that doesn't mean that I can't learn from it and tuck little bits of information away for future use. YDMV, and all.

    Threads like this make me feel very disinclined to post how often we respond to alarms or detail much about the way we deal with food when Jack's BG is high, or other aspects of our routine. I've been accused of micromanaging once in the recent past, and although I blew it off, repeat instances would not be particularly welcomed.

    Studies and research are all well and fine, but this is a very individualized disease, and we all deal with it in very individual ways. Darryl's way may be an extreme, but I've seen nothing to indicate that his daughter is traumatized by it. In fact, she posts on this board, so I'm somewhat disinclined to talk about her as if she was a nameless, faceless research subject or something.

    ETA: I just looked at some of Leah's posts, and one thing she said really struck me. She said that she only does a finger poke 2-3 times a day because of her CGMS. MANY of us on here check our child's BG 10, 12, 14, 16 times a day, and no one is haranguing them for the "psychological damage" that is doing. I think you could argue that responding to an alarm once an hour would be less intrusive than having your finger poked that often. (Not that I'm making an argument for either.) I'm just very uncomfortable with the casting of stones here, because once it starts, where does it end?

    ETA: I do think Michelle's concerns are legitimate. Virtually no one on here would be able to do what Darryl does, and I wouldn't want anyone to feel bad that they cannot. But that comes with having confidence that you're doing as well as you can for your child, which I know she and I both have. :)
     
    Last edited: Jun 19, 2009
  16. Jacob'sDad

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    There are those who spend a huge amount of time on this forum and there are those who spend a huge amount of time researching diabetes studies, trends, new research, etc., etc. There are also those that spend a great deal of time sharing that info with others and there are those who are involved in all manner of diabetes support, advocacy, fund raising etc.

    There are those who also involve their children in many of the things I mentioned above. Maybe their child is involved in many D related activities, fund raising, get togethers etc.

    So the question then becomes: What really constitutes micromanaging diabetes? Is it measured in hours per day in things related to D? Does 30 seconds spent per hour doing a minor correction really count as micromanaging? Or is many, many hours per week spent on the other things I mentioned micromanaging? Well, which is it???

    Let's say for example that I could spend two hours per day counseling others on how hard BG is to control or I could spend a total of one hour per day making my own child's BG control better. Which is a better choice?

    OK, now somebody is going to say, "Dave you've got it all wrong; it's not X number of hours on this and Y number of hours on that, it's just the opposite." That would be missing the point.

    The point is that we all spend a lot of time on D, some more than others, in many different ways and what we choose to do with that time is our own d*mn business!

    Suggesting that someone's way of doing things is wrong and another way is right is treading on very thin ice.

    It can come off as being VERY INTOLERANT!

    Whether it be Darryl or someone else I often find myself saying, "OK I can't do exactly what that person is doing. It's just not me. But what can I learn from them? What modification of what they are doing might work for me and my child?" But I love it when they post EXACTLY what they are doing and don't pull punches. I don't want anyone thinking, "Well, if I post EXACTLY what I am doing, people will think I am too over the top so I'd better tone it down and only tell HALF of what I am doing."
    I also don't think they need to start every post with some kind of disclaimer (the following information is not recommended by several leading members of this forum. Feel free to PM ____, ____, or ____ for more information).

    Anyway that's MHO. Take it or leave it.
     
  17. Nancy in VA

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    I think the point that Ellen was trying to make is lost. I think she was trying to make a point that in addition to counseling each other, there are new people that come on this board all the time and discussions of atypical treatments with a tone of "you aren't doing a good job if you aren't doing this" are very scary for a new parent. I think we have a responsibility to them as well, and yes, I'm not the only one who hears the tone of "you aren't being responsible if you don't do this".

    And, I do think that we all have a responsibility for the emotional health of our children as well as the physical health, and Ellen was posting her evidence that there are real psychological issues in many cases of children who are put in the type of situation that Darryl is describing. Again, not accusing Darryl but warning him - and warning other parents who might feel that they MUST strive for the approach that Darryl does - that not only is it probably not achievable but that each parent should factor in long and hard ALL arguments about the situation, not just the physical but the emotional.
     
  18. hawkeyegirl

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    I saw Michelle making this point, but I did not see this ANYWHERE in Ellen's post. Her post was pretty well dedicated to telling Darryl that he's emotionally abusing his child and setting her up for lifelong psychological trauma and an eating disorder.

    I'm sorry, but Darryl is not a moron, nor has he given me reason to believe that he has not given a thought to his daughter's emotional health. There was absolutely no reason for someone who has never met him or his daughter (but has read a lot of studies!) to go on and on about the grave damage he is doing to her. If Ellen is that concerned about it, a PM would really would have been the better option. It's massively condescending to think that he, and the parents on here in general are so wrapped up in obtaining the best! A1c! ever! that they give no thought to their child's emotional health. I think it's more a case of people being able to think, "Well, my A1c isn't as good, but at least I consider my child's emotional health, unlike those other parents."

    Darryl posts on this board a lot, and so far I've seen exactly NO ONE even attempt a system like he uses. There really is no crisis lurking out there that we're all going to set our alarm settings to 80/100 and have some sort of group massive fail. All sorts of advice gets posted on this board every day, and I've seen plenty of advice given that I certainly do not agree with and would not use myself. That's why we all have brains - to filter the good and the bad. If people do not have the capability to do that, they should not be seeking advice on an internet message board.

    ETA: I'm sorry, but this just makes me furious. If someone would have written Ellen's post about me, I can tell you that I would have closed out the page and never have been back to this site. If Darryl is driven away by this, it will be a MAJOR loss to this board. No one on here understands the MM system like he does, and his method of keeping blood sugar in range is truly remarkable. Even though we don't come close to using his method, I have learned SO much from him about CGM and its capabilities. He appears to have a fairly thick skin, though, so hopefully he will be far less offended than I was.

    Whew. I think I need a little self-imposed break here.
     
    Last edited: Jun 19, 2009
  19. Jacob'sDad

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    I think I'll start a topic titled "For all senior members (more than 100 posts): Post here if you have NEVER been accused by ANYONE of micromanaging D."

    I'll bet the first post would be the thread killer.
     
  20. betty6333

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    I haven't been on much lately, but I was so disappointed to read this thread.

    Recently there have been too many posts where we see differences and we let them divide us. I am so sorry to see this is yet another of those threads.

    Karla, thank-you for speaking up. Darryl, while I do not manage as you do, I respect your right as a parent to do what is best for your individual child. I support you as a friend and I hope that things will always go as well as they have gone.

    I hope that we can all come together in support of one another. I must say that I was surprised at some of this threads contents. I want to support parents on this board, but I will think twice before posting details now.

    If nothing else this thread has taught me a lesson. I only wish it had been a positive one.
     

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