- advertisement -

What is the secret to your success?

Discussion in 'Parents of Children with Type 1' started by joy orz, Jul 9, 2012.

  1. joy orz

    joy orz Approved members

    Joined:
    Feb 7, 2008
    Messages:
    2,460
    We have been at this for almost 5 year. Our endo said recently "You guys work really hard and are doing a great job."

    And it's true that we work REALLY hard at this. Ava wears a pump and Dexcom, we test overnight every night, we use combo bolus's, temp basals, a scale, every trick in the book.

    Yet Ava has not broken through that magical threshold of having and a1c lower than 7.5 and it frequently fluctuates up higher than that.

    I know this is an acceptable number for a 6 year old, but I also know that there are others on this forum who have much lower a1cs, and I can't figure out how.

    So if you (or your child) has an a1c of lower than 7.5, would you please be willing to share what you think the secret of your success is?
     
  2. Sarah Maddie's Mom

    Sarah Maddie's Mom Approved members

    Joined:
    Sep 23, 2007
    Messages:
    12,521
    I wish we had a "Stop" sign icon. :cwds:

    I know how frustrating it is when the A1c isn't what you hope for. We seemed stuck on 7.3 for years.

    I get the impulse to find that magic key, but I don't think it's that easy. If your individual child is happy and growing and healthy and doing well developmentally with a 7.5 at the age of six, I think you should feel pretty good about that.

    Just remember that she's not honeymooning ( the reason for many of the low A1cs we see posted.) She's not on a restricted diet ( another way to lower A1c). She's not being kept from activities that can mess with bgs, i.e., sports ( another way to avoid variability).

    JMHO. ;)
     
  3. joy orz

    joy orz Approved members

    Joined:
    Feb 7, 2008
    Messages:
    2,460
    Thanks, but I still feel like maybe I'm missing something. Obviously, there are people who are able to do this. Could be that she just never had a honeymoon. (she really didn't - we saw 400's the whole first year)

    The frustrating part is this summer all I seem to be doing is either fighting 300's or 50's with just one tiny change up or down on the basal. :mad::mad: And I haven't slept in a really long time. I look like a zombie.

    You're right though, we don't restrict her food at all. We try to eat healthy food that is good for all of us as a family, but I feed her the same way I would if she didn't have D. And I would never consider keeping her out of sports. Do people do really do that? Last night she wanted to wear her soccer shin guards to bed.
    You know just in case... "what if I fall out of bed, and hit my shins on my night stand?" :p

    More likely, I"LL be the one hitting my shin on her nightstand doing a bg check at 4 am. :rolleyes:
     
  4. mom24grlz

    mom24grlz Approved members

    Joined:
    Mar 30, 2010
    Messages:
    1,799
    i think we're just lucky. I know there are others who do exactly what we do but still have high A1C's I'm not sure why we have A1Cs in the 6% and once in the 5% range. She checks her sugar 8-10 times a day, I record her numbers every evening and once a week adjust I:C ratios, basals, and/or ISF once a week if needed. We count carbs (we do carb factors, so at home everything is weighed). We've been lucky and have had good numbers on both the pump and shots. She pretty much stays in range with an occasional high or low blood sugar.
     
  5. TheFormerLantusFiend

    TheFormerLantusFiend Approved members

    Joined:
    Sep 10, 2006
    Messages:
    4,925
    A lot of the variation I've seen in my A1c has not been related to things I've been doing, although some of it has been, so definitely some of it is luck. I'd also like to point out that some people with the same blood sugars have higher or lower A1cs; my blood sugar average seems to generally be about what you'd expect for the A1cs I have, but I'm not willing to say that my 6.6 definitely represents a better blood sugar average than somebody else's 7.6. So I'm a normal glycosolator.

    But here are some of the biggest factors that I know have made some difference:

    1. Willingness to change my basals EVERY DAY. That's one reason I don't like the idea of a pump; every time before I take Lantus, I look at what I did that day, blood sugars for the day, and expected activity for the next day, and adjust the dose accordingly. This made an even bigger difference earlier on, when my insulin needs varied more.

    2. 24/7 CGM. Wearing it part time didn't help much because it got me habits that made the times I wasn't wearing it worse. Also, checking the real sugar as well as looking at CGM all the time. I can correct highs faster this way.

    3. What I consider hypo- many times I've had lower A1cs because I was more willing to run lower. This kept getting me into severe hypoglycemia, so for now I'm okay with A1cs in the upper 6s instead of lower 6s with avoidance of severe hypoglycemia. However, if I wanted an A1c of 6.3 instead of 6.7, dropping my threshhold for where I treat hypoglycemia would definitely do it.

    4. Paradoxically, it helps to treat the hypos early with a small amount.

    5. Eating two meals/snacks per fast acting shot, instead of eating the whole meal at the beginning. This works better with the Regular than it did with Novolog, and has the added bonus of giving me way fewer stomach aches.

    6. Recording what happened after the meals where I did carb count- looking in retrospect to see how much a unit seemed to have dropped me, and how many grams carb I needed per unit.

    7. Being active every day. Doesn't need to be very active, just active.

    8. Changing big things often enough to stay interested.

    9. Not eating while high.

    10. Taking more insulin if I overtreat a low- before I see blood sugar shooting up.
     
  6. Sarah Maddie's Mom

    Sarah Maddie's Mom Approved members

    Joined:
    Sep 23, 2007
    Messages:
    12,521
    I know. Summer is hard - the heat, the change of schedule, the summer desire to be spontaneous ... Lots of out of range numbers here too.

    Maybe someone does know something that we haven't tried. I just know that the folks who post A1cs are most often within a few years of dx... :rolleyes: It's easier then - it just is. One cannot help but compare, but when you take into consideration all the factors that would make an apples to apples comparison, those 6.5s seem to vanish.:cwds:
     
  7. joy orz

    joy orz Approved members

    Joined:
    Feb 7, 2008
    Messages:
    2,460
    yes[/COLOr

    Do you do any special diet?
     
  8. TheFormerLantusFiend

    TheFormerLantusFiend Approved members

    Joined:
    Sep 10, 2006
    Messages:
    4,925


    Not really.
    I definitely don't eat low carb- I was eating 300-400 grams of carb per day for the first couple of years and am now eating around 200-250 grams per day (am overall just eating less food).
    I think eating low carb comes with its own hassles and that when I've tried it, my blood sugar has been harder to manage because of the protein spikes. Which I'd probably figure out how to manage, eventually, but they didn't strike me as easier to deal with, plus most of my high blood sugars don't have to do with meals anyways. I don't typically see mealtime rises in blood sugar.

    Because of my GI issues, I don't eat high fat meals often because they make me sick. I also prefer smaller meals.

    And I've been a vegan since 2000, but as far as I know that has nothing to do with anything.
     
  9. mom2Hanna

    mom2Hanna Approved members

    Joined:
    Jul 6, 2008
    Messages:
    972
    Hanna's last 2 A1Cs have been 7 and 6.8. The 7 was definately due to too many lows. But we worked hard for the 6.8, trying to get comfortable running her 80-100. I think that's what made the difference, I don't have her correct at 80 unless she feels low. She just started using the cgm and I hope that will help.

    But I do try not to get too stuck on a number, for the last 3 yrs she has Ben between 7.5 and 8. I try to focus on the day and how she did vs the bigger picture.
     
  10. TheFormerLantusFiend

    TheFormerLantusFiend Approved members

    Joined:
    Sep 10, 2006
    Messages:
    4,925
    Just saw the stuff in purple.

    I just spent a week traveling and was treating anything below 100 as low. In general, I treat 90 as low, but I go below 90 almost every day. When I wait to treat until 80 or 70, I run a low more lows in the 30s and 40s, because Dexcom has a delay and because I am only likely to feel hypoglycemia if it is well below where I usually treat. I would be less concerned about lows if the Dexcom alarms woke me up at night, but they don't. Plus it goes ??? in the night too frequently.

    I treat with anything from 5 grams to 20 grams depending on how hypo I am, active insulin, etc. But I have a BCR of 5, and somebody Ava's age probably has a BCR in the range of 8-12 (higher if she eats low carb), so that's equivalent to Ava treating with anything from 2 to 10 grams.

    If the CGM low alarm goes off while I'm eating, I tend to do one of two things; either I already knew that it was likely to go off and expect it to turn around soon, because it had been drifting slowly downwards when I started eating, in which case I just finish my meal as planned but keep an eye on the CGM over the next 15-20 minutes (remember the alarms is set to 90- if it drops to 78 or something it's not a huge problem).
    Or sometimes it's dropping down very rapidly, and I'm feeling hypo and sort of panicky. In that case I eat a lot more, and more sugary stuff, and inject more insulin as soon as I either see an up arrow or I see it cross the threshhold such that it's no longer low.
    There are some times where I have a panicky feeling but know that I'm not really in danger and in those cases I'll go drink a lot of water or eat something low carb or low calorie to be treating the feeling rather than the blood sugar.
    If the CGM high alarm goes off while I'm eating, depending on where I have the high set at right then (140 or 200?) and how much insulin I took, I either stop eating, set aside the food for five minutes, or move to eating something lower carb first. Sometimes if I had the high alarm set kind of low or I think my blood sugar is about to drop, I will just set the high alarm one setting higher (so I move it from 160 to 180) so that I can change the game plan if it truly is rising.

    If I'm treating a high by giving a truly huge amount of insulin, and I want to eat when it falls, I may test on my meter rather than depending on the Dexcom to show me when it starts falling. So let's say I'm 276, and I want that to drop.
    A unit drops me by about 60, so 3 units would really do the trick, but I want to come down faster. If I inject 6 units, I can plan to eat 3 units worth of food in about 2 hours, and that is likely what I'd do.
    If I inject 12 units (because I am HUNGRY), I will probably be down in just one hour, but this much insulin is less predictable, and I will try to plan to check bg in 45 minutes.
     
  11. BrendaK

    BrendaK Neonatal Diabetes Registry

    Joined:
    Oct 29, 2005
    Messages:
    3,835
    What kind of infusion set so you use? We have had times where numbers were 40-400 and the new endo told us to switch from 90 degrees to an angled set. Magic. Problem solved and numbers were much more predictable.

    The 90 degree sites would not kink enough to set off an alarm and insulin in tiny basal doses would often build up in the slightly kinked set and would all deliver at once. Hence very rough and unpredictable numbers.
     
  12. Christopher

    Christopher Approved members

    Joined:
    Nov 20, 2007
    Messages:
    6,771
    It sounds like you are doing a great job. If her A1C is where her Endo and you feel it should be, she is happy, well adjusted, healthy, developing, then maybe you should be happy with that at this stage of her dx. I totally get wanting to try and improve things and I am not saying you shouldn't. But if feels like you are looking at other people's A1C's and comparing. Each PWD is different and there could be a dozen factors why their A1C is lower than hers.

    I think Jonah does a great job with managing his care, but remember he is a young adult and what works great for him may not make sense for a 6 year old child.

    Maybe take a break from comparing and focus on other things for a while? You have many years ahead of you to try all sorts of different approaches.
    Good luck.
     
    Last edited: Jul 9, 2012
  13. sooz

    sooz Approved members

    Joined:
    Dec 4, 2009
    Messages:
    2,330
    When you said her school nurse considers 120 low do you mean she would give an uncovered carb at that point? We don't consider bg low unless it is below 80. We are generally thrilled with a 120 but then we don't have a cgm. It sounds like you are doing a great job! I am hoping we can get Hailey's a1c back to where you are.
     
  14. andeefig

    andeefig Approved members

    Joined:
    Mar 13, 2006
    Messages:
    1,616
    Joy, sounds like you guys are doing everything you can...and are doing it well! Just a couple thoughts...the nurse correcting at 120 seems a bit over cautious, especially with the CGM and perhaps that's what's keeping her up a bit. Also, what is her target? Perhaps lowering that if needed may help if you think you can safely do so. I'm not sure what the magical reason is that Max stays in the mid to upper 6's. Perhaps there isn't one. YDMV, ya know. His body pretty much responds text book to what he should with corrections, etc. I consider us lucky for that, not specifically skilled. Have her train with you for our mud run...that'll keep her active lol;)
     
  15. caspi

    caspi Approved members

    Joined:
    Oct 11, 2006
    Messages:
    5,134
    Well said. It drives me BATTY to read posts about people comparing their A1C's. The OP is doing a great job managing her daughter's D and she still doesn't feel like she's doing enough. And that's upsetting to me. :(

    To the OP, you have a happy, healthy, imaginative daughter (love the shin-guards-to-bed idea!) and you're doing a GREAT job! :cwds:
     
  16. kiwikid

    kiwikid Approved members

    Joined:
    Dec 29, 2005
    Messages:
    3,011
    We have been doing this for nearly 10 years now..:(

    We have been through periods when we have had great HbA1c's... then we have a year when things are terrible. Our Dr congratulates us when we get low 7's, and grimaces when we get high 8's, but to me we aren't doing anything differently... Its just the way Rachel's body is reacting at the time and I wish she would acknowledge that..
    Rachel is a happy, normal, naughty, very sporty nearly 11 year old and we are doing the best we can too.

    I have no ideas for you.. I just know its hard when you are doing the best you can.. :cwds:
     
  17. Lee

    Lee Approved members

    Joined:
    Oct 5, 2006
    Messages:
    9,633
    Well, we are just coming off of a spate of high A1C's, but we are generally high 6's, low 7's without a CGMS. It is so tough.

    Honestly - prebolus (I can't remember if you do) and don't have the school nurse treat until she is 80. That will probably drop it a few for you.

    But you are such an amazing mom, I wish you wouldn't beat yourself over it.
     
  18. emm142

    emm142 Approved members

    Joined:
    Sep 7, 2008
    Messages:
    6,883
    Well, I don't think you really need my advice because I'm 19 and despite wearing CGMS almost full time, checking BG 12-15 times per day, changing basals every few days and trying out all possible sites and the untethered regimen, my a1C is hovering around 8% right now. Totally frustrated with it. The ONLY thing I could do differently would be to go low carb, and that's tough on a pescetarian diet.

    I've really been beating myself up over my a1C and BG fluctuations lately. It just feels like I must be missing something if after 5 years of this and trying an effload harder than most PWD I know, I'm still not doing great.

    So yeah. I know how you feel. But it sounds like, given her age, you're doing significantly better than I am. ;)
     
  19. Ed2009

    Ed2009 Approved members

    Joined:
    Mar 3, 2009
    Messages:
    261
    With the usual disclaimer that this is not medical advice, and that you should check with your endo, we are having so far 7.1% average for A1c (there's a post of mine http://forums.childrenwithdiabetes.com/showthread.php?t=70598 a while ago about it).

    What I think we do is:

    1) Willingness to change basal. We are on MDI, and we are very aggressive in basals. Is some day goes out of control, we add one-two units of day basal the next day. For nights, if he's high in the morning when he shouldn't (having a low carb dinner the night before), then we add one unit for the night dose. We are more careful with night basal than day's, reason being that a low is easier to spot during the day.

    If the day we increased the basal becomes a low day, than we take back the one-two units, otherwise, we leave it as it is. We do not check and call with the endo each an every time, except if there's persistent high or lows (I think it happened twice so far).

    2) Corrections of fast insulin, that take more than 8-9 units, we do it in 2 waves, dosing 8-9 units every 45 minutes until reaching the overall correction. Say we need to correct 15, we'll do 9 now and 6 some 45 minutes later.

    3) If we do some eyeballed correction (meal out or not clear how much the potatoes looked inside the pie or the like), then check BG 2 hours later and correct -or not- accordingly.

    I think that pretty much summarizes what we do. Cheers, Ed.
     
  20. Tigerlilly's mom

    Tigerlilly's mom Approved members

    Joined:
    Dec 3, 2007
    Messages:
    3,492
    Joy, you have success!! You have a happy well rounded child who is experiencing her childhood to the fullest!

    You are doing a great job!!
     

Share This Page

- advertisement -

  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.
    Dismiss Notice