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quotes from Darryl CGMS

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

  1. Sarah Maddie's Mom

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    Lisa, I can't believe we were reading the same post.:confused: I didn't see any of the things you saw in Lauren's post. I don't even know where to start.... I'm just speechless at the disparity between what you are taking away from Lauren's post and what I read.
     
  2. Diana

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    Lauren -

    You should keep posting!!

    My son also hates the alarms going off at school - I actually turn the high alarm off while he is there. Sure I miss the opportunity to correct right away when he's drifting high, but I need to have his buy-in over the long haul, so we turn them off. We don't really talk about diabetes goals at our house - my son is vaguely aware that we are "shooting" for a certain average, and because he likes numbers and liked playing with the Navigator statistics screen, he knows what kind of SD we are shooting for. But as you point out, I have to be careful about how those kinds of messages are conveyed.

    We just went through a stretch of not being able to get him out of the 50s and 60s. He could easily tell how frustrated I was getting seeing those numbers. One of those days, we finally got him up to 90 and I said "YAY!!!" and did a little happy dance. He looked at me and said, "I hate it when you do that. Don't do that" Now, I don't really know if he means, I hate it when you act like a dork or I hate when you celebrate a number, but it is a gentle reminder that reacting to numbers is not always appreciated by your kid... even if the judgment is good.

    Diabetes is hard.
     
  3. Lisa P.

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    Sarah-- I deleted the original post right after because all that stuff really wasn't necessary to my point. I did see the post as having a lot of good info but also being very tailored towards one person's specific way of dealing with diabetes with his child. I think opinions should deal with ideas and strategies and information, and not personalize with things like criticizing range as something "my child would never do" or asking someone which sports his child plays or implying that his child is honeymooning so his information is not of value.

    I certainly would never suggest anyone not post, I think I always make that clear, but I think we should stand up here and insist that no one ever should feel the need to defend their choices in diabetes care to anyone on this forum. Period.
     
  4. StillMamamia

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    hissy-fit

    This really makes so upset.

    Noone here is locking down thought, for goodness sake! Merely putting out there some food for thought.

    Locking down thought is censuring and getting posts deleted and such, so noone will be able to see them and find out there is a different way of doing things.

    I can understand the irritation at getting the intention of this thread into another tangent. I can understand that there are 2 "arguing" camps (with some very hard-headed, straightforward and no-holds barred people), but that was it.

    Ugh!:mad:

    Sometimes I wonder if I just rationalize things too much over here...
     
  5. Diana

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    And I was thinking that things had recently gotten rather civilized around here the last few days!!

    Honestly, I think the issues that are being raised are important - judging numbers, emotional health, pressure of achieving perfect numbers, proper age of self-management (I'm sure I'm missing some). However, I think these are issues we all face with our kids no matter what method of management we use.

    I really appreciated Gina's insight and Lauren's. I think there were a few others from some adults that I thought were interesting too. The truth is, I don't have diabetes myself so I don't know what it is like. I haven't navigated the teen years, so I do feel like hearing about the issues that may arise is only helpful. But again, I don't think the points they make are limited to a particular management method.

    We all have to consider these issues, and then choose the management style that best addresses our kids needs (emotional and physical). I hope it's obvious that the answer is not going to be the same for everyone.
     
  6. Lisa P.

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    I think when someone is personally piled on for how he takes care of his kid, it's pressure to silence a POV. I think this thread has clearly shown that. This was not a general thread on whether tight control was a psychological problem, this was a thread laced with specific references to one child.

    I don't think the person in question is likely to in any way be intimidated, so I tried to stay out of it on the MYOB grounds for a long time. But this kind of thing intimidates people into falling in line in so many ways. I've seen people on this forum post things that fall outside of canon (not dangerous, just questions) and within four responses she/he is backpedaling and apologizing for ever opening his/her mouth.


    I have no problem with threads drifting elsewhere, I have no problem with any POV being expressed -- what I have a problem with is when it gets PERSONAL about someone else. It's a simple rule. You argue the point, instead of arguing the person down. You don't use someone else's child to make your point. It's bad debate and bad for a community.


    No, that's not official censorship, but I don't think it's fair play. I don't want to start a fight about it, but I'm telling you I'll stand up against it until the day I get booted off this forum or leave with a pack of torches behind me -- which I'm sure many folks hope is any minute now.
     
  7. Lisa P.

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    And this I've seen over and over again, too. All due respect, honestly, but you guys have now shouted down the person in question so that he's not posting on his personal choices anymore. That's not civilizing the thread, guys, that's shutting down the opposition.
     
  8. Lauren

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    sorry

    First of all I prefaced my post with... This is my opinion, take it for what it's worth. I am just a mom, trying to do what is best for my child, just like the rest of you. And if I can help others with my successes and failures, great.

    Darryl's methods for success were posted. I posted mine. Different kids. different ages. Different challenges. Different points of view. We are lucky to have a forum to exchange ideas.

    Lauren
     
  9. OSUMom

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    I appreciate a balance of opinions especially when a family is new to a piece of technology. The thread to me began almost like Darryl was an expert with the CGM not just what works well for his family so I really appreciate that we're hearing a balance of what comes into play for other families too. :cwds:
     
  10. Jacob'sDad

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    Darryl, do you only use one ISF because the corrections are so small that multiple ISFs are not needed? I currently use a different ISF for each different carb ratio and they are always the carb ratio times 8. Do you think I will find that I can simplify and go with just one ISF when Jacob gets his CGMS?

    Thanks in advance!
     
  11. hawkeyegirl

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    I'm in agreement with Lisa's point that this whole conversation could have gone differently if it would have been a generalized thread, or a, "Hey, here's what works for my child" thread, or a thread about whether CGM automatically leads to nanomanaging. (That word itself is really sticking in my craw, but we'll leave that along for now.) Really, my entire beef with the thread was that it started as a very pointed attack on one particular poster. I would think that someone trained to help families deal with the emotional reprecussions of diabetes would realize that a public, detailed "calling out" of the parent would not be a terribly effective method of conveying care and concern for the child.
     
  12. Sarah Maddie's Mom

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    Actually it started out as a compilation of Darryl's quotes ... which as OSUMom illuded to, may be part of the problem. I'm not blaming Darryl for that, or calling out the OP, just pointing out that a greatest hits album posted for any of us is bound to lead to problems.
     
  13. hawkeyegirl

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    Well, yes. Fair enough. And it's pretty clear that some irritation with that has been mixed in with other stuff, so that I'm not too sure exactly what anyone's beef is anymore.

    Although I think that a compilation of my greatest quotes would sell like hotcakes. :p
     
  14. OSUMom

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    Oh you couldn't get rid of mine even at a garage sale!! :p:D
     
  15. Diana

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    Well, if we are speaking of the same person (and I'm pretty sure we are), I think you would see that I am hardly shouting him down, and in fact, have been strongly supporting him.

    I will agree that the first several days of the thread were not all that civil. I was simply commenting that I thought the thread had turned and that now we seemed to be discussing the issues at hand without actually picking on anyone.

    Lisa - I think we agree on the larger point you make that these eruptions can make people think twice about posting when they do something out of the mainstream, and I do think that is a shame. I think posts in the vein of "we could never do that and here is why..." are fine because they bring up issues for all of us to consider. I think many of the posts in this thread veered way past that into "not only could we not do this, but you really shouldn't either, and no one else should either." And that is obviously not okay (at least not with me, and I'm pretty sure not with you either!)
     
  16. Rachel

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    This was the problem for me with Ellen's second post (#12), one which I believe set the tone for many of the others, particularly early on. The extensive quoting, the personal challenges, the assumptions made, the proof thrown down like a gauntlet at the end, the "respectfully" (which sounds very condescending, particularly given the "I believe" statements with which the post began), the use of the term "nanomanaging", and the no-response when Daryl responded to the questions ... all of these things have set me on edge, particularly given that they come from an "elder" of our community and from a person whose posts are usually so helpful.

    In the first wave of CGM use (April 07), Budapest did a compilation of EmmasMom posts and there were no problems.
    It can be nice to have all the tips in one spot, which was the intent of the OP.
    http://forums.childrenwithdiabetes.com/showthread.php?t=4529&highlight=compilation

    It was oddly fun to look back to see what was going on 2 years ago, both to see post from dear friends and to realize how far we've all come since then. Anyway ...

    Perhaps a fresh thread compiling technical tips for using a CGM would be good? Not any one person's tips but our collective current knowledge?

    And those who would like to discuss the potential emotional issues that could emerge with tighter CGM-based management could start another thread, either here in the CGM forum, if you think it CGM-specific, or in the Parents or General area.
     
    Last edited: Jun 23, 2009
  17. Darryl

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    The goals we set are easily realistic in our case, and have been achieved for more than 2 years straight with little effort.

    Before we use the tools we use now, and aimed for tight control we have now, we could not achieve any goal. Unless being on a BG roller coaster was our goal, then we would have achieved that.

    Just as we do. In our experience, because she maintains tight control, D is less a part of her life. We can all remember when she had to contend with interruptions to her daily life such as sitting out sports or not eating due to high or low BG's, testing her BG every day at school, worrying about D, etc. Now her life seems essentially "non-D". The alarm interruptions are nothing compared to phone calls, text messages, etc.

    All kids are different I suppose.

    I guess we'll cross that bridge if/when we come to it... I can only imagine how kids stop and look when another kid is passing out or throwing up or having a seizure, or doing a BG check, or other things she does not have to contend with. I don't really buy the "kids stop and look at a CGM beep" because it is no more unusual or obvious than a cell phone ringing.

    Swimming, biking, field hockey. FYI, we never cut basal in relation to exercise. IMO, Lowering basal is a convenient but flawed theory, and is the opposite of what the non-D body would do. It deprives the tissues of the body of the necessary glucose during exercise. It would be like slowing the heart rate during exercise. She eats about 15c every 15 min. while swimming, and also meals every hour or two if on a long bike ride, along with boluses for the meals, just like non-D's would.
     
  18. Darryl

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    I have never been a proponent of limiting anything that is posted in any thread, but I have to say that I don't even visit the parents forum anymore because it is such a haven for personal exchanges and attacks.

    So I was hoping that by switching to the CGMS forum, it would be a place where techniques and tips could be presented and debated without the personal exchanges and attacks. What surprises me the most is when people who have never even used a CGM or are clearly not even planning to ever use a CGM are here in this forum pouncing on CGM-related techniques.

    I'm not really bothered by it but I agree with what Rachel said.
     
  19. OSUMom

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    My son plays sports and eats when his blood glucose levels are "out of range" Fluctuating outside of a tight range of BG is not a fear for him (his A1C is good) or an interruption and he has never had a seizure or been in DKA since being diagnosed. He doesn't live his life worrying - he's too busy living life. When he's in class or at his summer internship, his cell phone doesn't ring - it's his CGM alarms going off in meetings or in college classes that is frustrating. I sure wish he could go to FFL and participate in the classes where they'll talk about the frustrations with the CGMS, but he can't get the time off from his summer internship.

    It's definitely a YDMV. :cwds:
     
  20. Lauren

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    Yes I agree, CGM has eliminated the roller coaster for M also, with very little effort, as you say.

    M has never had a siezure, passed out, thrown up in public. She no longer goes to the office, txts me, sits out of activities due to highs or low. She doesn't like the alarms in school. I have to respect that.

    That's great. If M ate 15 carbs every 15 minutes she would throw up. We tried keeping up with carbs first. We needed to find an alternative. After talking to members of team type 1, marathon/ultramarathon runners, olympians, mountain climbers, her goal is to start out around 160 now. And she reduces basals. It works for her (most days).

    I am just trying to put an alternate point of view out there. I worry about over burdening M with daily care too soon. *I* get burned out occasionally, even with cgm, it never goes away, and I don't have to do it 24/7. I can honestly say, if I had to do all this work to take care of myself, I am not sure I would do it as well.
     

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