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Young children's A1c range

Discussion in 'Parents of Children with Type 1' started by missmakaliasmomma, Sep 22, 2013.

  1. Christopher

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    There are a number of misconceptions here and I am not sure where to start. So I will just respectfully say that you may want to do some additional research on what diabetes really is, the role of insulin in growth, the effect of low carb diets on growing children and how protein is metabolized by the body.

    Good luck.
     
  2. Lizzie's Mom

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    Yes, six months is still on the learning curve, if not regarding the science, definitely regarding experience.

    I remember a CDE having a very frank talk with a very exhausted parent (me) about a year-and-a-half in. A1C was great - 6.4 - and I was to the point where I just was not sleeping much at all. She kindly and firmly exhorted me to strive for more balance - that a 7.5 was still a very good A1C and that A1C's don't, in isolation, guarantee a body will be free from complications.

    I've come to learn that excellence in D care is a worthy goal for which to strive, but that perfection is not only unattainable, but unwise for all concerned.

    Some of the best advice our D-team gave us was to make Diabetes fit into our lives, not to let Diabetes take over our lives. Burnout can and does happen, for both the caregiver and the child, and can reverse previous hard work.

    One thing we want to be very careful of is to present a proper attitude toward Diabetes management, because I'm not raising a D-child, I'm raising a future D-adult, and I want her to have a very healthy attitude toward her own care - that it not be a burden that must be borne every day, but a condition that can (yes, must) be managed in the course of every day life with its ups and downs and events and, well, normal food :).

    We're on the puberty learning curve currently, with A1C's running 7.4, 7.9, 8.9 :eek:, and 7.4 consecutively for the past year. And Diabetes is a part of our lives, not the main focus. That said, puberty requires extra attention to ever-increasing basal needs and weird fluctuations. Thankfully, it is a season!

    We make use of the tools we have and yes, there are strings of late nights and interrupted sleep, but there are also strings of rest.

    So we live our lives, manage well, make use of the tools at our disposal, pray for the best possible result and ultimately for a cure.
     
  3. wilf

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    Dude. It's worth thinking a bit longer before typing and submitting a reply. That way you can avoid coming across as needlessly and unintentionally offensive.

    The level of effort involved in D management for any given target A1C varies hugely from child to child for a variety of reasons. Even for the same child, the level of effort required varies hugely over time.

    When you say ".. might as well go for the 6.. it's not that much work.." you're speaking from your perspective for your child at this point in time. You need to be aware that for many children at many points in time an A1C of 6 is just not achievable. Period.

    You haven't revealed how old your child is - it would be helpful to know, so that we can put your comments in some context. You also haven't revealed whether your child is honeymooning, though with a diagnosis just a few months ago and you pontificating about A1Cs of less than 6 he likely is honeymooning big time.

    It's easy to be a superstar during and just after the honeymoon, just as it's easy to do well in a sprint if you're given a head start. The thing is, techniques which are useful when sprinting can be counterproductive in distance running.

    D management is not a sprint and you won't always have that head start - D management is a marathon. And techniques that might help you achieve that target of 6 in the short term, can blow up in your face and have profoundly negative consequences for your child's mental and physical health over the long term.

    The way you deal with your child's diabetes now can set him for massive rebellion against the D down the road, or it can set him up for lying and hiding "bad" numbers, or set him up for an eating disorder, or worse.

    Take it from one who's been around for awhile. Easing up a little now can pay major dividends later.
     
  4. Beach bum

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    You took the words right out of my mouth.

    8 years in and we are still no where near the finish line. Some days, it feels as if we have repeatedly climbed Heartbreak Hill over and over, other days it feels like we've just left the gate at Hopkinton. (Ya think I'm from the Boston area?:p)

    Until a cure is found, or until the AP finally comes to market, I will just keep running at a good pace.
     
  5. DavidN

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    Dave -
    Sure you came onto the board with a bit of a swagger, but I didn't take offense or view that as a terrible thing. You're clearly doing your research and I'm sure you'll continue to learn with experience. I would just echo what others are saying, which is keeping an eye out for your child's emotional health in additional to their physical health. Perhaps you are all over this as well, but that's not clear from your posts.

    What I do find refreshing is the optimism you bring to the board with regards to future treatment and technology prospects. Unfortunately there are people around who try to squash that whenever it pops up. I'm more the "Andy Dufresne" type, who believes that hope is a good thing. Others are in the "Red" camp and believe that Hope is a dangerous thing. But I suppose like Red, they've been around the block a time or two, and you and I are relatively new at this. However, on our side is what you alluded to, which is the rate of advancements in this field. Moores law is the very real exponential growth over the last several decades of computer chip performance. The biotechnological equivalent is the Carlson Curve and others laws like it. I hear all the time about the "uncle who was diagnosed 35 years ago and was told a cure is 5 years away and he's seen diddly squat since". That's short sighted IMO. I know my son was diagnosed 14 months ago and over that short time I've witnessed the appearance of "game changing" (the words of many seasoned parents on this board) technology with the G4. Dexcom wasn't even around 10 years ago. Go figure. Kids are going to camp wearing big bulky bionic pancreases. Do they perform perfectly? Nope. Are they bulky? Sure they are. Did they do a pretty darn good job managing BG's while they were in use? From my understanding, yes. Did the kids and parents miss the technology when the trial was over? By all accounts I've read, absolutely. 10 years from now our kids will have enviable A1C's because they'll be wearing FDA approved, fully functioning bionic pancreases. I would be willing to wager what I consider to be a lot of money on my assertion. If anyone wants to take me up on it, we'll lay the ground rules (that would make an interesting thread), hire a good attorney to draft the documents and set up an escrow account. Sure it's no guarantee, but I'd love to have that wager as part of my retirement planning.
     
  6. Nancy in VA

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    I'm not sure if we went no-carb and checked every hour if Emma would achieve a low 6 A1C. I think some people's metabolism and genetics will make them easier to manage than others. We had ZERO honeymoon - we were throwing 300s from the get-go. If I get a 24 hour period with all numbers under 250, we celebrate, because that's how rare it is!! When I read about others that have very routine numbers here, I really believe that its because their body chemistry is just different.

    Treatments are better than they were 10-15 years ago. You don't need a SIX to limit complications - the studies have shown that LOWERING the A1C can reduce complications and that's when they were talking about going from 8s to 7s and the major reduction in complications. I think people can work hard at it and get 7s and others can do nothing and get 6s or 8s or 12s - there are too many factors to enumerate as to what influences BGs and A1Cs
     
  7. swellman

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    I used to think the same thing. Don't get me wrong I still see spikes up into the 300's that I can't explain. However, I played and played with basals and I honestly think there's a sweet spot where things go much smoother. I don't have a formula but I can say that I have only 2 basal time periods and they are something like 0.75 and 0.65 U/hr. Before I had, like, five. Maybe we stumbled onto something but we treat lows a bit. We tend to treat lows with food that other non-D children would snack on.

    Maybe it's my nature, being a science-based person, but I tend to believe that people, as a rule, are pretty much the same in a biochemistry sense.
     
    Last edited: Sep 26, 2013
  8. danismom79

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    My daughter never had a honeymoon, either, and from an emotional standpoint, I'm glad for that. From what I've read from parents here, it can be quite jarring and rocky coming out of it. I literally guffawed at the idea that going over 160 is considered a meal spike.

    I totally get the optimism as a new d parent. But we never had the....I'll use the word "opportunity"....to believe everything was so easy and would remain so until the cure came gift wrapped in "5-10 years."
     
  9. Sarah Maddie's Mom

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    Sigh... so it's the Believers and the Luddites now, is it?

    We all know that biological/technical innovation is increasing (thank you, "Carlson Curve". Thank you, "Moore's Law":rolleyes: what? we're playing boys at grad school - first semester? BTDT, psst, it's pretentious :cool:) Sadly, we Luddites know that the FDA may well dick around and screw things up so it isn't just about what's possible, it's about what's available.

    But by all means, believe that you know what's coming down the pike. Carry on. And be sure to enjoy your certitude while you can.
     
    Last edited: Sep 27, 2013
  10. Darryl

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    Then I would get a CGM. It's not just about helping you get to an A1C of 6%, it's about being able to react immediately to BG trends and head off severe highs and lows.
     
  11. Darryl

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    Dave,

    Agreed on part 1.

    Look into part 2 some more. I think I've read that high-protein diets can be stressful on the kidneys and not necessarily ideal of people with T1. We have never modified our daughter's diet other than that to avoid carbs when BG is high, and avoiding junk food and large soft drinks that we'd avoid anyway in light of the connections to obesity and T2 in children.

    Part 3 - Autoimmune diseases have never been cured (T1, celiac, thyroid, hashimotos, lupus, arthritis, psoriasis... to name a few) and likely will never be unless they find a way to genetically re-engineer a person at conception. In the 7 years since I've been in this community, the only breakthroughs have been a smaller-gauge lancet, a smaller-gague and more accurate CGM sensor (the Dex G4), a couple of wireless insulin pumps (Omnipod and ping), and other product innovations. I don't think there have been any biological advance in treating diabetes in the last decade.

    Agreed on part 4. The current technology is amazing and permits us to control BG in a way not possible until about 8 years ago.
     
  12. DavidN

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    Touche. Although you may have trumped me with Luddite. :cool:

    Yes they might, but they also may not. Is that such a terrible thing to believe?

    I think you're confusing your Daves. This Dave's only prospect of a 6 is standing on his head in the Endo's office.

    It's 1:30am, I'm up fighting a low (and a Luddite), I'm exhausted and a tad depressed. Right about now I usually think to myself, wow, it'll be cool if one day my son or I won't have to do these night checks. And sometimes, on a good night, that thought makes me feel just a tad better. Tonight however, I'll trudge back to my bed and my baby monitor knowing the FDA will probably f@ck things up. Thanks Luddite. ;)
     
  13. swellman

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    Funny, I'm up at 2:31 because my son said he started his Dexcom when we changed it and I found out that he must have been looking at the TV. I think that's a different thread but ... here we are.

    EDIT: Well, not really funny but ... I hear you, brother.
     
  14. nebby3

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    Count us among the no honeymoon people. It will be ten years for us next month and there were never any easy ones.

    We returned to MDI a few years ago by my dd's choice. Our A1cs improved. Could just be age but I also wonder if things got better when I couldn't tweak too much.
     
  15. Michelle'sMom

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    My CWD grew up eating low carb, unprocessed foods. I've outlined her meal plan & exercise routines in past posts. We do all the things you've mentioned, & always have. We take advantage of all the technology, & I've spent a great deal of time over the last 4 years studying, participating in webinars etc, hoping to learn some magic trick that would instantly give us amazing results. If A1C was only about all those things, especially how much work we put it into management, we'd never see anything over a 6.


    In reading through all the comments, I didn't see the Joslin medalists mentioned. Considering the information coming out of those studies, it seems to me there's more to complications than just a low A1C. They had none of the tools we have for most of their lives, yet many have only minor, if any, complications. My take from those studies is that our goal should be to focus on overall health, & doing our best at management. The A1C may or may not reflect that.

    Personally, while I was happy with A1Cs in the 6s (with few lows), I tried very hard not to take them personally. At this point, I'm very happy I did. If I took credit for all those great A1Cs, then I would also have to shoulder the blame for those that are now less than stellar.
     
  16. Michelle'sMom

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    Your comments, & similar ones from my visits with adults dx'd as young children, are the thread of hope I hold onto. She will always have issues from PCOS, but my hope it will be easier for her once puberty is over.
     
  17. Lee

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    I was one of those people - we actually had a two+ year honeymoon where her A1C stayed in the 6's. After my first year, I did believe it was all do to what great management we had...don't get me wrong, we did work hard. However, now, at year 8, we are working 3X's as hard for horrible results...
     
  18. Christopher

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    I don't see anywhere in this thread (or in general) where people are squashing optimism about technology. I think there is a distinction between improved technology/tools to manage diabetes and a cure. I think everyone here appreciates the improvements in technology and benefits from them.

    I also don't see where people are saying hope is a dangerous thing. What I see are some people who believe a cure is coming in the future and others who do not believe a cure is coming any time in our or children's lifetimes. It is simply a difference of opinion.
     
  19. mom24grlz

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    i think accurate carb counting and adjusting insulin on frequent basis does help achieve lower A1c. However i also believe some children/adults like Ashleigh just have an easier time. Whether that be body chemistry, metabolism, family hereditary, or just plain good luck plays into it too.

    Ashleigh did not have a honeymoon period, her insulin requirement have always gone up since her dx.

    She is in the midst of puberty, but while i've heard of a lot of girls having numbers in the 400+ range. We seem to be lucky, in the week before Ashleigh's period her numbers mostly range in the 150-200 range. We occasionally have a number between 250-300 but not that often. We do temp basals during this time and it helps.
     
  20. Mish

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    Again, that's a huge assumption that those of us who are not getting decent a1c's are not doing these things. The second part of your statement is far closer to the truth, far closer than someone who is easily obtaining good numbers knows. I'm glad you think that your hard work comes into play, but it probably accounts for less than you'd guess.

    I can count carbs down to the gram. I can dose them perfectly. Today it might work, tomorrow it might not. He can have one morning wake up when he's 100 and one morning wake up when he's 200, after eating the same food for dinner and doing essentially the same thing during the day. Today, he had a low after breakfast. After eating the same breakfast he eats every single morning. And he went low. And why? Who the hell knows. I can adjust insulin daily, and using a CGM, I can adjust it on the fly. And, it makes NO difference on most day. I talk to many, many, many smart diabetes parents who all have the same issues. They're all putting in every ounce of energy they have into diabetes care and they're getting the same shitty results.

    Really, I could probably save myself a lot of trouble, do half as much work, and just accept an a1c of slightly worse.
     

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