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Prebolusing below 100

Discussion in 'Parents of Children with Type 1' started by forHisglory, Jul 7, 2016.

  1. forHisglory

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    I am a part of several diabetes support groups and I finally found what I was looking (it started me researching the glucose spike issue). Here is an online post from a Joslin Medalist that talks about a recent meeting he attended and the last paragraph he mentions the problem of having lots of highs and lows. Ultimately though, like Samson pointed out, genetics must play a larger role and may triumph even in strict management. Stephen Ponder posted about the variability in the A1C being a factor and linked this article: http://www.healio.com/endocrinology...thy-nephropathy-in-teens-with-type-1-diabetes

    Long Term Success With Type 1 Diabetes- by Richard Vaughn

    "I have been type 1 for 70 years, and I do not have any serious diabetes related complications. While participating in the Joslin medalist type 1 study in Boston, I was told that several participants freely admitted that they have not taken good care of themselves. They eat a lot of food containing sugar, and other fast acting carbs. Despite their bad eating habits, they do not have any complications after many years of type 1. All of the 1000+ participants have been type 1 for at least 50 years, and are US citizens. I was also told by the lady in charge during my participation that several participants have used tight control, but have experienced some serious complications. These are the exceptions to the rule. The majority of the participants in this study have done at least reasonably well with their control, and they do not have any serious complications.

    In the Joslin Medalist Study, Dr. George King, head of the study, did discuss the "special inner protection" that so many medalists have. He said that this mysterious protection seems to protect us against serious problems with our eyes, kidneys, and our nervous systems,but not our hearts. He wanted us to know that we should take every precaution to keep our hearts healthy. There is a secret group on Facebook called "The Joslin Medalists" where many members have posted about their stents, bypass surgeries, heart attacks, etc...but these same people have good eyesight and healthy kidneys.

    After almost 60 years of type 1, I was diagnosed with spots of retinopathy, and neuropathy. My A1c had been in the range 5.4-6.0 for many years, but I still had these complications. My control involved too many highs and lows, a roller coaster type of control. Those highs and lows can produce an average which is quite good, so the A1c will also be good. That can give us a sense of false security. The roller coaster control is traumatic to our bodies, and complications can result, even though the A1c is good. I started pumping insulin in 2007, and my control was much more stable, with not so many highs and lows. The retinopathy disappeared, and has been gone for nine years. The neuropathy is still present, but it rarely bothers me now. Avoiding complications seems to require a good A1c, and more stability with not so many highs and lows. If I had started pumping in the 1990's I may not have had any complications at all.
    I read an article a few years ago that said the life expectancy of young type 1 diabetics in the US is almost as good as for non diabetics. That is very encouraging news!!"
     
    Last edited: Jul 13, 2016
  2. forHisglory

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    We tried waiting for the bend yesterday (20 minutes, waking at 135) and ended up at 49.......after breakfast was consumed. I have to continue to tweak the prebolus. I think the Dexcom doesn't catch the bend fast enough......there must be a lag from the real time bend. It was a first for us, treating a low after breakfast had been consumed. Breakfast wasn't the best, 2 unfrosted pop tarts and turkey sausage, (something he's been asking to try) and I assumed he would spike big time from it. I think it's really dumb we have to think so hard for one simple meal.
     
  3. samson

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  4. caspi

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    Richard is a wonderful man and is also a part of this group. What he isn't, however, is a doctor and I say that with the utmost respect. This is just his opinion and is not based on any medical evidence, and I'm pretty sure he'd agree with me on that. :cwds:

    You also have to remember that when we're talking about these wonderful Joslin medalists, they didn't always have the better insulins we now have nor even the ability to test their blood sugar the way our kids can. Things have come a long, long way in the past 20 years.
     
    Last edited: Jul 13, 2016
  5. forHisglory

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    I don't know if its just his opinion or not as there are several studies on effects of hypoglycemia (and it's damage on the CV system) as well as the hyperglycemic spikes (in type 2 mostly, but I don't discount those as hyperglycemia is hyperglycemia). Linking all of them here seems a poor use of my time as I don't think most people take time to read them. His post made me think twice about battling the spikes above 300 vs. throwing in the towel as "oh well, it's diabetes." Honestly, his post was encouraging and also concerning for me at the same time especially paired with the studies I found.

    Do you know of medical evidence that would put my mind at ease regarding postprandial spikes? Solid counter evidence?
     
  6. rgcainmd

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    I agree with what caspi has said about Richard. I've "known" him for a little over a year now, as I spend quite a bit of my time over on the TuD Forum. While they don't come sweeter or more supportive than Richard, a lot of his knowledge base was acquired during the "Dark Ages" of Type 1 treatment. Although Richard has clearly not remained in the past, as evidenced by the fact that he is now utilizing the greatly improved technology we currently have at our disposal, his grasp of some of the more medical/technical aspects of diabetes is lacking. (It is very difficult for me to say this, as Richard is such a great guy.) But I thought it important to echo what caspi said regarding what he's posted as being his opinion. While I'm not saying that he has no clue about that which he speaks, I think it's important to keep it in the proper perspective as an opinion from a person who has lived well with diabetes for many, many years but who nonetheless believes that some people have both Type 1 and Type 2 diabetes at the same time when, in reality, this just isn't possible. When it comes to D-worries of this magnitude, I'd stick with the information provided by the "gold standard" of multiple randomized controlled trials.

    Regarding forhisglory's question ("Do you know of medical evidence that would put my mind at ease regarding postprandial spikes? Solid counter evidence?"), if I understand her question, this "solid counter evidence" may be hard to come by as I believe this (more or less) falls into the scientific realm of "You can't prove a negative." ...
     
    Last edited: Jul 13, 2016
  7. forHisglory

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    An interesting discussion for sure. Essentially, the gold standard is the A1C and we shouldn't be concerned with extreme fluctuations even if they occur on a daily basis (I'm talking below 60 and above 300)? Even if the A1C averages out, there are no long term consequences to management that has short term extreme fluctuations vs a more steady approach? If not, then great. I can quit stressing about it, that takes off a load. All I seem to read about is the hormonal cascades, vascular damage, etc as a result of hypo and hyper episodes and it really does stress me out if I can't fix it and there is a stubborn pattern...as much as love the motto, "stay calm and treat the number." After awhile, I start to wonder if my calmness is just apathetic burnout and I was thankful for the jolt and spur to keep improving management. As far as other supporting evidence for A1C triumphing over extreme glycemic fluctuations.......that's splitting hairs. I think I'm steadily convincing myself not to worry about the roller coaster.
     
    Last edited: Jul 13, 2016
  8. samson

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    forhisglory, I don't think we should just stop trying to eliminate the day-to-day roller coaster blood sugars, as they make kids feel bad and it's more nerve-wracking to dose insulin when there's that wild swinging -- I also think it's often hard to get A1C down when those swings are happening too frequently. But I think when we're doing our best and those swings happen despite our best efforts, we should reassure ourselves that we have not doomed our children to a bevy of complications. And I personally think if there's a situation where you have to tradeoff swings versus A1C, then you should aim for the lower A1C.
     
  9. forHisglory

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    Thank you Samson, I won't be giving up on either goal and your perspective is right on.

    I did find a great NIH study tonight describing the lack of evidence for intraday glucose variability causing micrivascular damage. It is potentially a factor for neuropathy in T1DM (and current from 2015!). It's been shown that oxidative damage does occur with spikes but that the swings probably don't cause the damage I was really worried about. Our A1C has been great, but our SD (standard deviation) is a bit high. I think controlling lows may be the key for us.

    I'm really thankful for all the input here.

    If interested:http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4508260/
     
    Last edited: Jul 13, 2016
  10. jenm999

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    As they say, there's no point in worrying about what you can't control. A certain amount of roller coaster comes with the territory. I'm aiming to do better too but I'm already kind of turning myself inside out and there IS a point of diminishing returns.
     
  11. forHisglory

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    I just read the basal post and saw the prior 9 segments that are now 3. Maybe we are both getting wiser!
     
  12. caspi

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    You are still pretty new to all of this. There's a saying in the DOC: "Diabetes is a marathon, not a sprint." My son will have spikes and yet his A1C is still where it needs to be. For now. :wink: Who knows what tomorrow, next week or next month brings. I've long given up the notion that we have full control over this. We treat and move on. Once you are able to get yourself to that place, and I know it's not easy, you will see that everything is going to be okay. Our kids have the best tools available at their disposal, along with the best insulins. There is absolutely no reason why they shouldn't all live long, healthy and most importantly happy lives. :cwds:
     
    Last edited: Jul 13, 2016
  13. Christopher

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    This ^^^^^^^^^

    I don't think anyone is advocating not "worrying" about spikes. My approach is to try and keep her in range as much as possible, understanding that she will spike high/low sometimes and when she does I will correct/treat as soon as possible to bring her back into range. I am not sure exactly how those spikes will effect her long term but the bottom line is spikes will happen and I do my best to deal with them when they do. I can't worry about the future because there is no way to know what will happen. I think the fact that several other people here, like Christina, jenm999, rgcainmd, etc whom I all respect their opinion, have chimed in saying essentially the same thing, should give you some comfort that it is not just one parent saying this.

    This ^^^^^^^ Should be a Sticky.
     
    Last edited: Jul 14, 2016
  14. caspi

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    I wanted to add that if you are spending time in some of the FB groups, you've more than likely seen pics of CGM graphs with straight lines. I assure you that's not the norm. :wink:
    image.jpeg
     
  15. Christopher

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    I would second, third and fourth that!! :tongue:

    here is our real life roller coaster.....

    Coaster.png
     
  16. forHisglory

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    Thanks everyone! :welcoming: And, yes, I have seen the flat line club Caspi.
     
  17. Christopher

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    ^^^^^^^^^^^^^ Reason #23 why I am not on FB. :p
     
  18. samson

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    Oh man this looks like gently sloping hills compared to our toddler's CGM graph!
     
  19. Christopher

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    I bet! Managing Type 1 diabetes is hard but I just can't imagine what it is like to manage it in a toddler/very young child. Hang in there!!
     
  20. scarral

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    "Those highs and lows can produce an average which is quite good, so the A1c will also be good. That can give us a sense of false security. The roller coaster control is traumatic to our bodies, and complications can result, even though the A1c is good."

    This agrees with what I've heard from our medical team. They say "there is no good control with a good A1C and wide BG swings". I recently read in a german book about pumling, CGM and T1 (CGM und Insulinpumpe Fibel) that the standard deviation of the SG should be less than 45mg/dl. Looking at our sensor data, that means SG that stays within 70 to 180 most of the time. And 70% of the time within 70 to 180 is not enough if it includes a spike above 200.
     
    Last edited: Jul 14, 2016

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