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In a moment of weakness ...

Discussion in 'General Discussion' started by Scribe, Nov 7, 2010.

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  1. Scribe

    Scribe Approved members

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    I actually spent about 30 seconds a week or two ago wondering if I should use a CGMS. Silly me. I now have 5.7 reasons (at least) to argue against any future thoughts in that direction.
    That's my latest, a1c, of course and it came after spending nine weeks on the road covering campaigns in every corner of the country and a full year of high-stress living.
    So, my question: To those of you who have considered but decided against using CGMS, how did you arrive at that decision?
    For me, it was simple. I've had D a very long time and have no complications; never had a seizure, never gone to the hospital for a D-related reason; never been incapacitated by a high or a low.
    My control is great and my life is even better.
    I know there are a lot of people who swear by CGMS and have better lives because of them. That makes me happy. But we don't often hear from people like me, so to all of you out there, I'd love to hear your reasons/thoughts.
     
  2. StillMamamia

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    "In a moment of weakness..." <<< you're going to get slack for that.:p

    Aaanyway, for us the reasons we don't have a CGMS are 1) financial and 2) psychological. The latter meaning my son just started to do better with site changes and I truly think he needs more time before we insert something else on him.

    Even if we do get one, and I think we will eventually, I don't think we'd use it all the time. At least not at first.

    I also know, by doing a trial run months ago, I looked at the thing all.the.time. Maybe that would get better over time once the novelty effect wears off, but I know me, so....

    Ask me again next year.

    It is a really good asset (not weakness) to have.
     
  3. emm142

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    Using a CGMS is far from weak. Actually, I consider it to be a sign of strength to be able to put up with something kind of itchy and painful to insert for the good of my short term and long term physical and psychological wellbeing.

    Good for you if you have the perfect body which somehow seems to act in a non-diabetic fashion most of the time. I don't.

    Sorry if I sound sarky, I'm just getting pretty annoyed by people who chime on and on about how successful they are and how certain things ALWAYS work for them, because it's not like that for me. Something works once and it doesn't work again. Nothing ever really WORKS at all, sometimes. For some people, a CGMS IS medically necessary, and it's not exactly going to make them feel good to read about how "weak" they are.
     
  4. MReinhardt

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    Thanks Emm! Thats the words I've been looking for.

    Actually, I'm kind of glad my daughters numbers are not perfect 100% of the time. You know why?! Cause, she never has to have a let down or be a shamed of what her finger stick is or A1c.

    Not everyone is going to be complication free, even with a low A1c all the time. Human beings are not perfect, we all have flaws even if they are hidden.
     
    Last edited: Nov 7, 2010
  5. joan

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    This is my son's take on the CGMS. He has had d almost 16 years, no seizure, no DKA, feels lows and know what he is doing. He doesn't want to be overly obsessed with the CGMS and constantly worrying about the number. He checks himself about every 2 hours and doesn't think he needs it to know much more. I on the other hand am completely different and would love for him to use one, but its his d and thats that. Once in a while I will be a pain and tell him just to try it, we have one which he took out after 5 minutes, but he never agrees. I think he is a bit old fashioned since he has had d for so long. Whatever. I am really still hoping for a noninvasive bg monitoring device.
     
  6. nanhsot

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    Love to hear stories like this, thanks!

    We're still new at all of this but my son briefly did look into CGMS, he decided against it since he really doesn't want 2 sites (he is about to start pumping). Combine that with my input that he really is very level so far (knock wood) with no huge fluctuations or lows and it is hard to justify.

    Finances factor in hugely as well. I'm already struggling under the weight of saving for each 3 month pump supply shipment before our insurance deductible is met.
     
  7. betty6333

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    :eek:

    I am glad you don't have any real "problems" or complication from or in dealing with diabetes. I wish we all had the same "problem" of feeling like we couldn't or don't need to try a little harder to monitor diabetes in our children.

    Posts like this remind me just how much YDMV is so true!!
    :eek:

    Please understand I am not saying everyone should use a CGM. I am saying I wish I didn't have a real "need" to have my son wear one. 50 solid years of not one severe lows, not one problem highs or ketones and a1c's under 6 sounds pretty dang nice to me! I wish he could have that problem. With all my heart...:(
     
  8. TheFormerLantusFiend

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    I use a CGMS. I used one in 2008. I spent close to two years not wearing one.

    Here's why:
    1. It hurt. The Dexcom seems not to, but I was in constant pain while wearing the Guardian.
    2. It was expensive and I had no insurance coverage for it.
    3. I was frustrated by how little it helped. I did not wake up for alarms, I saw no real patterns, and my A1c increased while wearing it.

    I decided to resume using a CGMS a few months ago (and my A1c was looking great) and here's why:
    1. I was having crazy out of nowhere numbers I wanted to catch earlier.
    2. I hoped that another CGMS might be less painful (it is!).
    3. I wanted to see if things about my body's responses to food had changed (they have).
    4. I needed to be doing fewer bg checks. My doctor wanted me to stop pricking my toes (sing ho for neuropathy!), and all of my fingers were painfully bruised.

    I have so far found that the CGMS is currently useful in:
    1. Helping to decide how aggressively to treat highs.
    2. Knowing which foods give me spikes.
    3. Motivating me to inject ahead of time and treat highs generally.
    4. Reducing number of bg checks.
    5. Smoothing my nights out, by waking me up, even if only some of the time, to treat highs and lows.

    I haven't had an A1c since starting on the Dexcom but this time I'm expecting the Dexcom usage to have lowered my blood sugar.
    I think the fact that you've had D for as long as you have without any complications and that you are not bothered day to day with highs and lows are strong arguments that you do not need a CGMS. It still might be worth trying to see if you're wrong about any of the assumptions you make about your blood sugar. You don't have to keep using it if it doesn't help.
     
  9. Mom2rh

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    My son has a great A1c as well. My dh asked his endo a question about variances in glucose monitors.

    There is up to 20 mg/dl variance in either direction of a single blood glucose test. A blood glucose test is almost useless because it only tests at a moment in time. It doesn't give you information on the direction your blood glucose is going.

    While our son does not use a CGMS at this time, it really seems like it is going to be standard down the road. The information it provides would be much more useful in maintaining good BG ranges.

    I guess the best poor analogy I can give you would be making decisions on who to vote for based on a headline versus reading the entire article.
     
  10. Marcia

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    We will be making the leap to cgms in the near future, I can't speak to that experience. What I can speak to is how fluctuating hormones at the onset of puberty and growth spurts really cause havoc with blood glucose. An adult with T1 doesn't have that challenge. Those who have toddlers and infants who are unable to tell their parents that they feel a low must surely see cgms as a vital component of treatment. YDMV, while adults have their own challenges, to think of using a tool to alert a pending high or low, especially for some who have hypo unawareness is certainly not a weakness. Congrats on your A1c.
     
  11. BrendaK

    BrendaK Neonatal Diabetes Registry

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    I choose not to wear one for myself. Because my numbers are very stable (I'm still in a honeymoon) and I feel my lows. My A1C is also very good (5.7).

    I choose to use one for my son for LOTS of reasons. He doesn't feel lows, he's often unstable at night, never wakes from hypo or hyperglyemia at night, he plays sports, etc. the list goes on. OH, and after almost 10 years of me waking up every single night to check and treat blood sugars, I wanted to be able to sleep with some peace of mind.

    Wearing a CGMS has brought his A1C from 7.7 to 6.6 AND I'm sleeping at night now. The proof is in the A1C if you ask me. It has also brought my son peace of mind, he feels like he is more in control of his diabetes and doesn't have to interrupt what he is doing all the time to do a fingerpoke.

    Many adults have much more stable numbers than children. It's like comparing apples to oranges.
     
  12. lisanc

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    Marcia ... I agree with you wholeheartedly!!

    I think for adults the CGM may not be the most valuable tool. I really cannot speak to that.

    But for a child whose numbers can have great variability due to growth hormones and such ... it can be a wonderful tool. For my daughter it just plain old helps us keep her in tighter control without worrying. And we like tighter control not for the A1C but because it just plain old makes her feel better.

    Finally, I really have to say that your A1C is wonderful and it really is terrific how well you do. But, we should remember that an A1C does not tell the variability of numbers, which many think is more important, or how many lows or highs ... but rather is an an average. Too many uncaught lows can cause affect the brain, growth, etc in children.
     
  13. Jacob'sDad

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    What can a CGM offer someone who already has great control?

    1) It can help tweak basal patterns. I don't know if you are pumping, but either way it can show you what is going on with your basal in the background.

    2) It can help time pre-bolusing. You would be able to see exactly what your BG does after a meal.

    3) It can warn you of lows in the night that you might be missing. It can tell you exactly what is going on with your BG at night.

    4) It can tell you what effects different foods have on your BG.

    5) It can expose all the up and down movements in your BG that you might not realize you have. In that way, it can humble you.;)

    Hey, you don't have to wear it all the time either. You can use it occasionally to tweak things.
     
  14. frizzyrazzy

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    We have a CGM because we're stupid and lazy and I can't be bothered to really play close enough attention to my son's diabetes.
     
  15. Ellen

    Ellen Senior Member

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    The very readable book Beyond Fingersticks gives clear and compelling reasons why the CGM is a most important tool for persons with type 1 diabetes http://www.redbloodcellbooks.com/art.html written by a person who has used a CGM for many years.

    That said, my son was not comfortable with the first gen Navigator (intense itch, alarms...), although we found it to provide invaluable information. I hope he'll be amenable to the next gen.
     
  16. Lee

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    Oh, I thought it was just me - being all weak and lazy...I mean, who cares about overnight seizures. Or large spikes. OR about the sense of security it gives my child at places other then my house...

    Scribe, I guess I don't see the point of your question - I read it more like you were letting us know your A1C and making a snide comment to all of us parents who cave to the "moment of weakness"...

    Maybe it was the lack of sleep that led me to getting one for the safety of my child. Maybe that is my weakness. Or maybe it was the endo lecturing me on the likely hood of severe and permanent damage - such as stroke and brain damage - now that my child has had three overnight seizures...

    Yeah - that must have been my moment of weakness :rolleyes:
     
  17. selketine

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    Scribe is local to me and although I don't know him, I've had some nice interactions with him through PM's on the board. I think his way of discussing something can sometimes rub people the wrong way - which I can see why - I don't think it is intentional if that helps.:cwds: He didn't post it on the parents board - I think the post is directed at adults (maybe older teens) with type 1 - self managing.

    I love the cgms - but I love it more than William. I can tell already (and he is 8) that he wears it mostly cause I want him to. I think it keeps him safe in ways he can't imagine yet - and I hope that some day he will want it on his own. (not that he hates it - but he definitely has a like/dislike relationship with it) I hope it also becomes so much less intrusive, easy and cheap that it is a no-brainer.

    I think it would be interesting for Scribe to try a cgms for awhile and see how stable the #'s actually are - how the a1c is being achieved (through stable good range numbers or through too many lows). I would love to see a report back after that. I still think some children (and adults) have more volatile numbers due to factors that may be beyond their control. I give props to those living with it 24/7 in their own bodies - and I definitely think YDMV.
     
  18. MikailasMom

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    Well, some of you are much nicer than me, I will not apologize for being snarky. I am in the lazy weak catagory then too I guess. My daughters last
    A1c was wonderful, almost in the non d range (not bragging, trying to make a point) For the last 9 weeks she has had one infection after another including scarlet fever, a toe infection, 2 bleeding ulcers (h-pylori) and 2 upper respiratory infections, and is now being watched this week for whooping cough. Her dex is a life saver! She isnt high constantly but will have random out of the blue highs into the 3 and 4 hundreds in an hour and a half from a starting check off the low 100's irregardless of food or activity without any pattern. Thanks to the Dex we are able to catch the freak highs and treat them alot sooner, as we normally wouldnt have checked until the 3 hour mark.

    I find your post frankly pompous and sickening. Why in the world go to a site where you know people are struggling everyday and brag about your perfectness? I find your behavior and lack of caring for others feelings and choice of practices appalling. You have had nuemerous posts in the past stating crazy practices (i.e. how often you go without changing a site comes to mind) that could be extremely confusing to a new person and just seem blatently irresponsible. We are dealing with puberty, infections, loss of honeymoon and now an immune system being attacked by this autoimmune nightmare. Are you?

    You and your apparent ignorance are the reason people think WE are doing something wrong.

    Im glad you and you alone are perfect. If you are the example of perfection, I'm darn sure glad that I have flaws. I am truely gratefull that you are the only one. I am also grateful to the rest of the people in my life and on this site that are not, it's what make us HUMAN!

    I will not apologize to you but the other humans on this site who may be offended...Sorry
     
  19. MamaC

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    Same.

    Apparently my own moment of weakness occurred when I blinked and let my kid get diabetes. My bad.

    Scribe, honestly...those of us with less than perfect diabetes experiences (who even knew those exist?) and who have already dealt with the complications that you have so fortunately avoided for such a long time, may not relish so much hearing about your amazing control and A1C and whatever else. (I know *I* don't.) I really wish you would consider your audience when you post such things. The implication, intentional or otherwise, is that you ROCK diabetes and we don't. And while I know that's not true, the implication is still there.

    We don't use CGMS, though I personally would choose a CGMS over a pump if my kid would allow any one device to be sited to his body. He will not, and due to his age (almost 18) I respect his decision. His body, his choice.
     
  20. hawkeyegirl

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    No offense taken here. Your post was perfect.

    Scribe, you don't need a CGM. Your a1Cs are non-diabetic, you never have debilitating highs or lows, you do not struggle with basal rates or exercise or any of the number of things that the rest of us do.

    Kudos to you. Sorry if I don't have a parade every time you post about your awesome, awesome life with diabetes.
     
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