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Hb1AC - what number is feasible?

Discussion in 'Parents of Children with Type 1' started by JenniferM, Mar 31, 2009.

  1. JenniferM

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    Hello,

    I know that we all strive to have a low H1AC for our children.

    What has been your lowest H1ac but not a the detriment of a lot of low. We just got back from the endo and DS is at 7.3. I feel ambilivalent about it. On the one hand I am thrilled, on the other hand, I wonder how much more tweaking I need to do to lower that number.

    I realize that we also have to take into account the quality of our children's lives. I am just curious as to how you all feel about it.

    Thanks,
    Jennifer
     
  2. mmgirls

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    I think it reallly depends on the age of the child, if they feel their lows and what tools you have available.

    I am ok with my 4yr olds aic of 7.8 and it has been lower around 7.4. When we get the cgm I will srtive for closer to 7.0., and take a lower aic as long as we o not experience lows.
     
  3. Caldercup

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    I think it depends on the age and situation of the child. My son is still in a strong honeymoon, and, although we are very careful carb counters, I know that most of our success can be attributed to the fact that his pancreas is still kicking in.

    After an A1C of 13 at diagnosis in Oct '08, his next A1C was 5.1 in January and the doctor wanted to lower his Lantus and adjust his carb ratios significantly.

    I know we won't see these numbers for much longer, but... there ya go.
    Eileen
     
  4. Darryl

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    We're pretty aggressive, set a BG target of 90, and correct anytime BG is over 100 (except when expected after a meal). We use a CGM, and also Apidra which is a fast insulin that lets us correct more precisely. Our dd's A1C has been at 5.6% for the past 2 years, both during the honeymoon (TDD 10u-15u/day) and whatever phase we're in right now, possibly still some honeymoon - her TDD now ranges from 20u to 35u/day. Very few hypo problems, but a lot of attention is needed to the CGM readings and alarms.
     
  5. hsmommyofmany

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    my sons is 8.3 but he was just diagnosed in january and his endo was very pleased with it since it was a decrease from 10.8 at diagnosis. my son is only 3 so his endo says he is happy with anything between 7.5 and 8.5 so we are in the desired range. i know ours is going to be higher when he goes back and i am worried about that but we have been having a rough time with high sugars, he is still honeymooning somewhat so we do lots of adjustments. i think 7.3 is great...you should be happy with that number.
     
  6. Kirsten

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    Griffin is 4. We have had as low as 6.9 in the summer. It seems like increased (and consistent) activity helps to keep things stable (along with fewer viruses, etc). Right now it is 7.8. I would like to see better, but I try not to stress. I know it will improve in the summer.
     
  7. Mom2Deacon

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    Deacon seems to be perfectly happy with being 8.1. He has been that for the past several appointments in the past year.

    --Sara
     
  8. hawkeyegirl

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    Jack's lowest a1C has been a 6.4. My goal is under 7, so as long as we hit that, I'm happy.
     
  9. Sarah Maddie's Mom

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    Darryl, since our girls are close in age I always note your A1c posts with amazement. How big a role does your dd play in her D mgmt? Does she do her own self care at school and for sports and sleepovers and all that?
     
  10. Darryl

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    It is worth reading the DCCT study for guidance on this issue.
    DCCT: The Study That Forever Changed Treatment of Type 1 Diabetes

    Half of the 1,400 T1 patients who participated controlled their A1C to under 6.05%.
    The patient age ranges were from 13 to 39 years old, with no prior retinopathy or
    kidney damage. The other half of patients had A1C's in the 7.5% range.

    During the 10 years of the trial, those whose A1C was maintained at under 6.05%
    had 50% to 70% less incidence of retinopathy and kidney damage, as compared to
    the group with the A1C in the 7% range.

    Although this study began with T1 patients at age 13, and does not cover younger
    children, there are no studies I am aware of that have demonstrated that children are
    more tolerant of high A1C's than adults are. In fact there have been reports in this
    forum of children developing neuropathy and other issues by the time the reach their
    teenage years.

    While today's tools (fast insulins, pumps, and CGM's) make it feasible to safely achieve
    an A1C in the 5%-6% range, many endo's are still advising their patients (along the
    line of Hanas' book) that A1C's in the 8% - 9% range are safe for a young child. I don't
    know what evidence such a recommendation is based upon.
     
  11. selketine

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    That is totally true. You cannot easily make comparisons because we all have such a mix of ages, hypo awareness, insulin delivery, cgms, etc.

    I think if you have a CGMS *and* it is working well for you (some struggle to get it to work the way it should) then you can do more tweaking to get them lower without quite as much danger of missing severe lows. This is my guess from what I've read about it - our Navigator just came in the mail yesterday.

    I always thought it important that the A1c is what I expect from seeing his meter averages - so I am likely not missing too many highs or lows. From there I try to tweak but with my son (young and pretty much unaware of lows) it is a nail biting task. I'm hoping the CGMS will provide some improvement on his A1c (which isn't bad - low 7's). I'm also hoping it will help him tune more into how his body feels with highs and lows (and sudden drops and rises). I'm also hoping it raises HIS "quality of life" in that he might feel more secure about knowing his numbers. I think I will - if the darn thing works!

    I think at this point I'm just prattling on.....:p YDMV
     
  12. Darryl

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    Sarah,

    She manages on her own now, other than when she is asleep (either my wife or I respond to her CGM alarms overnight). Through 4th grade, she needed our help during the school day, and called us from school every few days if the CGM reading was getting out of control. Each night we reviewed the CGM's 12-hour display screen, and look at her pump log data, and would discuss with her whether she handled situations correctly or whether she should have done something differently. By the time she started 5th grade last fall, she pretty much had it all down.

    It's kind of like teaching a kid to ride a bike, or drive a car. It seems like a lot of information for them to handle at first, then it clicks. One great thing about the CGM is that it makes the raw data obvious for the child to see at all time - my dd sees much more data than I do now, and she sees it real-time. She has learned for herself the consequences of every decision she makes. There are times now on the weekend when I hear a low alarm and look at her CGM and say "you need 4 carbs" and she'll look at the same data and say "no, 3 carbs". Not that 1 carb matters much, but it's nice to see her acting this independently.

    It's also amazing to see how non-disruptive the process has become for her. Every hour or so she hears a soft beep, glances at the CGM, and either sips a drink or makes a quick adjustment to her pump, and gets back to her routine. It was great this year when she took the PSSA tests at school. She didn't need any special accomodations, just sailed through all 4 days making her adjustments when the CGM indicated!

    With sports - she's not big into sports, but does swim for hours in the pool, and does other sports like field hockey. Sports are tricky because we never know in advance how much energy she will expend, and the timing of it. She keeps a closer eye on the CGM during sports, and raises her target to around 120 during the activity. There is no particular formula that she uses, but if BG is 120 and rising then she will not eat, and if it is 120 flat or falling during the sport then she'll take a few carbs every 15 minutes or so. We also watch the CGM for about 2 hours after the activity, for signs that carbs were over or under what was needed. We have learned for some activities like recreational swimming, that she just needs 1 carb per minute, however after hours of swimming, some errors will accumulate, so if she sees BG rising to 140, say, after 2 hours, she won't eat any more uncovered carbs until BG comes down a little.

    Sleepovers are still an issue unless there is an adult we can trust to respond to her alarms overnight. Fortunately sleepovers are not that popular around here!
     
    Last edited: Apr 1, 2009
  13. Diana

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    Darryl,

    I have said this before... but I'll say it again. I think your daughter is amazing!! We are a looooooong way from being able to handle it like your family does, but it gives me hope and something to strive for.

    diana
     
  14. czardoust

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    Thank you. I totally agree, it depends onthe child. A low A1c is probably very easily obtained if the child is either currently honeymooning OR honeymooned for a long time after their dx. Kat honeymooned for 4 days after dx. Since then she has had mysterious "honeymoons" every yr or so that last maybe 3-4 days a stretch (sometimes 1-2). I have heard of some honeymooning for months, even a yr, and I wonder how on earth could that be (and of course, why didnt Kat). Kats dx A1c was 13.0, it took us 3 yrs to break the "10.0" wall, and her lowest yet has been 8.0, with the averages lingering somewhere between 8-9. I totally am floored every time I hear that 3 months or less after initial dx, someone is below 8. I would do anything for a A1c in the 7 range for Kat.
     
  15. Sarah Maddie's Mom

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    Thank you, Darryl, for that detailed post. Your daughter is obviously a very mature and capable girl. :cwds:

    Just one more question... How do you manage things like eating out and food prepared by others? I find that we can hit the mark with foods that I prepare for Maddie but get into trouble when she eats out or eats with friends. Any tips?
     
  16. Darryl

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    It's not a big issue for us because she has Celiac so we make all meals and her school lunches at home. When we go to a restaurant we bring the Salter scale and weigh everything. We also avoid high-fat foods that would make carb counting less predictable. You might have read my post recently when she ate a whole can of whipped cream because she thought it was "low carb". We saw the effect around 6 hours later, and had to give her an additional 1.2u. I actually feel kind of bad for all the non-celiac kids whose parents have no good excuse to deny their kids burgers, fries, and pizza!

    When a meal is mis-estimated, it's usually pretty clear around 90 minutes later. For example if she is at 100 pre-meal, then at 90 minutes BG has come down and is flattening out at 120, she will take an small additional bolus at that time. IF BG drops below 80 and the alarm sounds (or if she feels low), then she'll eat a little. Either way, the CGM helps her navigate BG back to the 90-range around 2 hours after each meal.
     
  17. Darryl

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    Thank you Sarah. I share these posts with her, and remind her that her being brave enough to
    try the CGM (starting way back few kids were using them) pays off not only for her, but also
    that her experience might encourage other kids to try it.
     
  18. Mom2Boys

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    My son is 3 and we try to maintain an A1C under 7%. His most recent A1C after coming out of the honeymoon was 6.7%. Our endo would prefer his A1C to be higher closer to 8%, but we keep pretty tight control with few hypos so there isn't much that they can complain about (except the amount of BGs we do).

    Every person and child manages diabetes differently so it's hard to compare A1Cs to anyone else. Since Luke is with me all the time and I prepare most of his food, it's not that hard for us to adjust things throughout the day as needed. Once he is in school, I'm not sure if we'll be able to maintain this control.
     
  19. Nancy in VA

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    Our last A1C was 6.9% but the Endo knew we weren't happy with it - because of all the lows that represented. It did, however, come pretty close to our meter average, which at least told us that we were catching most of the lows.

    I'll only be happy with a lower A1C when I know the Standard Deviation is lower - right now, ours is way too high
     
  20. ecs1516

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    We got the Navigator last August for my older son and September for my younger son. We have had as low as 6.3's and 6.2's but since the Navigator we have actually went up for now. Our last A1C (today) was 6.8 for my 12 year old and 7.1 for my 9 year old. They had been in the mid 6's since 2004. The Navigator has virtually eliminated all lows. For the past 15 days I printed out both kids had only one low each. And the low was only a 66 I believe. No more bad lows. So, because of that the A1C has went up. But, before the lower A1C was false number I guess because of the lows. My next step to reign in the higher numbers. My 9 year old is going through some growth right now. The endo noticed that the standard deviation is low on both. My older son has a S.D. of 30 for breakfast. His highest S.D. is 51 at before bedtime.
    My younger one is 36 S.D. breakfast and 77 post dinner! We have to change some things for afternoon. So, I answered more than was asked but bottom line I want below 7's now. Our insurance may change to Humana or to blue cross and Endo said she has never got Bluecross to pay for sensors. Maybe that is just for Navigator? We are in Georgia.
     

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