- advertisement -

Is the message really that this is as good as it gets??? Long, sorry.

Discussion in 'Parents of Children with Type 1' started by Gracie'sMom, Oct 29, 2009.

?

What was your D-child's last A1C range?

  1. Below 6%

    7 vote(s)
    5.4%
  2. 6-6.4%

    18 vote(s)
    14.0%
  3. 6.5-6.9%

    27 vote(s)
    20.9%
  4. 7.0-7.4%

    30 vote(s)
    23.3%
  5. 7.5-7.9%

    20 vote(s)
    15.5%
  6. 8.0-8.4%

    20 vote(s)
    15.5%
  7. 8.5-8.9%

    6 vote(s)
    4.7%
  8. 9-10%

    1 vote(s)
    0.8%
  9. > 10%

    0 vote(s)
    0.0%
  1. Gracie'sMom

    Gracie'sMom Approved members

    Joined:
    Aug 26, 2009
    Messages:
    1,039
    1) Do you pre-bolus? If so, how many minutes before the meal and have done after-meal testing to see if the pre-bolus has eliminated or acceptably reduced the post-meal spike? We just started pre-bolusing yesterday, that was one piece of the puzzle we did get yesterday that we were missing.

    2) How many times a day do you test BG to make sure the CGM is properly calibrated? We calibrate every time we do a BG (if it's in the ok range to calibrate) so, 6-10 x/day.

    3) What is the target BG range you are aiming for? Officially we are aiming for 80-180 according to the endo:) When we have a "good week" that we feel she is doing well, we are around 80-140. I am pretty happy with that range, but it is very rare for us. The pump is correcting to 110+/- 20 from 10pm-6AM, and 90 +/- 20 from 6 AM-10PM.

    4) Do you eat high, medium or low glycemic index foods? Have you made changes to diet to temporarily reduce or eliminate foods that repeatedly cause stubborn highs or bad spikes? Her diet varies greatly. Sometimes mostly protein, other times a higher glucemic index. We don't see much of a consistent pattern, except for Mac and Cheese and Thick-crust pizzas bring her higher, which we have learned to minimize almost completely with the combo bolus.

    5) Do you count carbs, and bolus according to carb ratios that you are confident are working for her? We do. We have attempted changing a few of them lately with some really low lows as a result (30's and 40's every day). They seem to be right. The endo agrees, doesn't mean they can't be changed.

    6) Do you correct when her BG is high, and if so what correction factor are you using and how was it derived? How many times a day will you correct if she is running high? If she is running high we always check her IOB, we use one of two correction factors, 12am-5pm it is 1u:100, from 5pm-12am it is 1u: 90. If she doesn't seem to have too much IOB, we will correct as many times as we need to, sometimes 6-7 x/day, sometimes she only needs the 3.

    7) What % of her daily insulin needs are covered by boluses, and how much by her basals? We are almost at at 50% each. The day I am reporting on here is not so even due to the high #'s at bolus 17.7u and basal 11.16u. Most days we are within .5 units of being equal.

    8) Does your daughter exercise every day? Would you describe her as active or sedentary? She is pretty active. Swims 1-2 x/week, pretty strenuous gym class 2x/week, plays outside 30-200 minutes daily depending on her desire . .

    9) How much does your daughter weigh, and what is her TDD? She is around 75#. Her TDD on the day I am covering waas 28.86u.

    10) Who makes the insulin dosing decisions - your DD, you, or the clinic? We have been. It was set up by her old endo and they tweaked it for us for a while. We didn't like waiting for a response. A 250 BG today is the 500 BG of tomorrow.

    11) Do you log her stats? Yes.

    12) After you've posted answers to these questions, try in a second post to give us a day's worth of numbers (time and amount of every bolus, basal rates, all carbs consumed, and BG readings for:
    - before each meal; 7am -- 86 , 5.45u, 10am snack 0.80u, then 2nd snack of 0.9u (birthday treat in class, ugh), 12 pm 114 3.45u, 3:40 pm snack 0.9u followed by 45 minutes of swimming, 6pm--234 4.8u. 2 snacks 7:41 0.50u and 8:27 0.90u.
    - 2 hours after each meal -- 9am 240; 2pm 180, 8pm-200
    -- her bedtime (9pm) 239;
    - your bedtime 10pm 229;
    - 2 overnight by 12:30 am she has risen from the 229 to 400 which we bolus for coming back down below 180 by 4 AM, when she wakes the next am she is 88.

    I do not have her exact carb info for everything, but her meals were breakfast: 70, lunch 69, dinner 78.

    It sounds like a lot of work to answer these questions and it will be a lot of work. But I think it will be worth it. The folks on this site have more experience between them in managing the D than the all of the staff at your clinic..

    I agree, you guys are much more experienced and I SO appreciate all of the advice. Thank you so much for any insight you can give us. Let me know if we missed anything.
     
  2. emm142

    emm142 Approved members

    Joined:
    Sep 7, 2008
    Messages:
    6,883
    The overnight rise is the first thing I would deal with.. Especially if it's happening on a regular basis. Have you done any fasting basal tests?
     
  3. Gracie'sMom

    Gracie'sMom Approved members

    Joined:
    Aug 26, 2009
    Messages:
    1,039
    Not to sound stupid, but what is that?
     
  4. Gracie'sMom

    Gracie'sMom Approved members

    Joined:
    Aug 26, 2009
    Messages:
    1,039
    I can see how people would get offended by it, but I know what you meant to say. It sucks to be on my end, I was at your end with good A1C's and part of me did feel it was because of me and that if I kept vigilant her A1C's would stay at 7.4 which felt so good:) Then this last year happened . . . 3-4 inches growth since June . . . and I got a re-adjustment in my self-perception. I put my foot in my mouth daily, and I am in healthcare with people paying attention to every stupid thing I say. I appreciate your help. Don't stop posting.
     
  5. hawkeyegirl

    hawkeyegirl Approved members

    Joined:
    Nov 15, 2007
    Messages:
    13,157
    Oooh. Yes. Your nights are a definite problem, which is actually good, because in our experience, they are the easiest to fix.

    To do a basal test, she needs to be in range at bedtime. I like to see a starting BG anywhere between 100 and 140 for an overnight basal test, because there is room on both ends to move. So she has supper (low fat), and then has no evening snack. If her BG is in range at bedtime, you're in business. With the CGM, it is easy, peasy, because you don't have to do finger pokes every hour. You just look at the graph in the morning and make changes based on it.

    If she's running in the 200s-400s every night, that is seriously your problem right there. She needs more insulin early on at night, and possibly less in the early morning hours.
     
  6. hawkeyegirl

    hawkeyegirl Approved members

    Joined:
    Nov 15, 2007
    Messages:
    13,157
    I wanted to add that until you get things figured out, I'd do my best to cut down on the snacking. It's just impossible to see what is going on when there is always food or IOB. If she MUST snack, I'd keep them light on the carbs, and low GI where possible. Not forever, but just while you work on this.

    But to be honest, the snacks are a part of your problem. When your child is eating every two hours, their BG remains elevated, instead of returning to "normal" before the next meal. Over an entire day, that can really add up.
     
    Last edited: Oct 29, 2009
  7. Sarah Maddie's Mom

    Sarah Maddie's Mom Approved members

    Joined:
    Sep 23, 2007
    Messages:
    12,521
    So you post something that your Dr said, and somehow it's not your responsibility when someone finds it condescending and then you imply that I'm a crank for suggesting that you might live to regret making such a statement and now I've kicked you and chased you under a rock? Is this a grown up board or are we children?
     
  8. emm142

    emm142 Approved members

    Joined:
    Sep 7, 2008
    Messages:
    6,883
    Sorry, I'm just used to the terminology my dietician used and have to say I've done all of three fasting basal tests ever.. They suck!

    Anyway, I was taught that to adjust basal I need to skip a meal and test BGs hourly over that time period, to see how BGs fluctuated at that time without any food (so you can separate a basal issue from an I:C issue). So to test morning basals you can just skip breakfast, to test midday basals you can skip lunch to dinner, and to test evening basals you can skip dinner (that is definitely the hardest, IMO!). To test night time basals, you just need to miss out any bedtime snack, and test hourly or two hourly throughout the night (although, if you have a CGM, that probably isn't necessary).
     
  9. susan

    susan Approved members

    Joined:
    Apr 28, 2006
    Messages:
    1,101

    Oh good grief! It's a wonder any one posts on here anymore..If someone puts their foot in their mouth, which I've done before and I'm sure lots of us have, and then they apologize is there ANY need to bring it up several post later..Just move on to what the OP was asking instead of pointing out some ones mistakes again..
     
  10. momma_fish2007

    momma_fish2007 Approved members

    Joined:
    Aug 26, 2009
    Messages:
    311
    I think everyone's getting touchy. We're all talking about our babies and no matter whether it's a breastfeeding issue or diabetes or whatever people do what is best for their kids. And whenever someone's opinions differ from our own it's gonna become an issue.

    We were personally told by our endo at our last appt that our a1c of 8.6 was not unreasonable for Julian's age (almost 3) and that frankly anything lower for him than 7.5 or so is a little on the low end. Every endo is different and when I read your original post on this it seemed crazy to me and it still is not my style to do it that way but I'm glad for you that it's working and his a1c is doing so well. You must be exhausted!

    And I'm with you about how things come across with type, sometimes things come across as sarcastic or obnoxious that were never meant so. So hopefully we can all get along again :)
     
  11. Momof4gr8kids

    Momof4gr8kids Approved members

    Joined:
    Sep 3, 2006
    Messages:
    4,143
    Wow, this has gotten quite out of hand.

    Ok, so I have noticed that seeingspots tends to rub others the wrong way, but I also believe that she honestly wants to help, and is trying to deal with her child's D (mentally and emotionally).

    Sarah, if you have a personal issue with her, take it into PM. She apologized, deleted her post, and still got a load from you, but you expect her not to go on the defensive? Then you call her childish for her remarks? Well, I'd take a good look at myself if I were you before I started calling people childish.

    This whole type of thing was part of why I took a long break from CWD. Back to my break. This is the type of thing that I would rather not have to sift through when reading a post, but some folks just can't let things go.
     
  12. 2type1s

    2type1s Approved members

    Joined:
    Nov 23, 2008
    Messages:
    1,438
    Hi Gracie's mom! I'm not going to address the back and forth going on, but would like to offer advice and support. I have 2 daughters with D, and at our last check-up, Zoe was 7.3, and Morgan was 8.3. I was so discouraged with Morgan's number, but given nothing but support by our team. Morgan left feeling empowered and ready to work. That's the kind of team you want.
    So first, I'd pick one thing to fix, whether it's the basal test, post-meal spikes, I:C ratios, then go onto the next thing.
    At our Diabetes family day this weekend at Vanderbilt, I learned that pre-bolusing really is the way to go. We had always counted carbs and bolused after, unless it was a pizza, pasta, ice cream feast, etc. I have always been scared because Morgan started on a very strict program (10 years ago) where she had to eat certain amounts at certain times, no more, no less. Then when we moved to Lantus and humalog, we carb counted and gave after the meal, and felt like we had been given a new life....which became even better after the pump. Now all that being said, when Morgan was young, her A1C was between 6.8 and 7.6. Now we have had trouble keeping it under 8 for a year. Partly due to puberty, partly due to her being tired of it all, and not doing what she was supposed to do, and partly my fault for trusting my usually responsible to be doing what she was supposed to.
    The other thing I fixed was overnight ratios, and that has made the biggest impact. Even though it meant getting up twice a night for both kids for weeks, we have finally been waking up in the 100 range.
    It is hard and there is no great age for diabetes, you are here learning and trying your best.
     
  13. buggle

    buggle Approved members

    Joined:
    Mar 24, 2008
    Messages:
    4,267
    SeeingSpots has 3 children 2 and under and is battling rheumatoid arthritis. She is one of the kindest and most considerate people I've ever known. So, please don't take her comments the wrong way. She's already said that she didn't mean things the way they were taken. And if we all think we're sleep deprived, I think she probably makes us all look well rested.

    When I see someone with a toddler getting an A1c in the 5's without lows, they have to do being something right. I admit that our family hasn't been willing to do the work necessary to get Brendan under 6 and this may sound terrible, but we don't want to do that level of work at this time. I may be fooling myself that I think Brendan's C-peptide level is protecting him to some degree and I don't want to make his life any more controlled by D than it already is. I do feel a sort of guilt when I see others getting their kids' A1c's really low, but I figure that's my issue. I'm so happy for the families who can achieve this.

    Back to the original point of the thread... I think that it's really worth the time for all parents to learn to adjust our children's rates. I also think we need to build the confidence to trust our intuition. Our endo told me that she had been working really hard herself (not the CDE, but the endo) on getting a child's A1c under 8. She said she was having a horrible time and that she couldn't adjust insulin the same as a parent, who is there all the time, sees the patterns, knows the activity level of their child, their food, etc. No one knows our children like we do. The best intentioned CDE can never do as well as a knowledgeable, confident parent.

    Some kids seem to have D that is much easier to manage too. I know that we spend much of time chasing Brendan's ever-changing insulin needs around. I really don't know if we could get him under 6. I do feel nervous and unhappy everytime we get an A1c, but I've been told over and over again by other parents to stop judging myself by that number and attaching so much significance to it. I try to use it as a tool to help improve. We have one in about a week and I know it's going to have gone up a ton. I'll probably have to lick my wounds for a few days and then pick up and get going again. That's life with this stupid disease.
     
    Last edited: Oct 30, 2009
  14. ShanaB

    ShanaB Approved members

    Joined:
    Apr 4, 2009
    Messages:
    900
    I'm so sorry that I can't address the original post as I can't offer any advice -- we are putting in so much work and our last A1C was 9.3. I feel your pain and hope the fine folks here in combination with your new endo can provide the advice and support you need.

    I just wanted to address Cherie's comments. She is my d idol. She has 3 little ones (incl an almost newborn), is using all the latest technology, has health issues of her own and is always willing to help. I know she didn't mean her post as it was interpreted, I know I have learned a lot from her (including how to rig all sorts of cool stuff!).
     
  15. selketine

    selketine Approved members

    Joined:
    Jan 4, 2006
    Messages:
    6,057
    Well...I like William's pedi endo but wanted to get another look at some issues so I turned to Gary Scheiner who does remote consulting - he wrote the book "Think Like a Pancreas" and he often presents at CWD conferences so he is a well known CDE: http://www.integrateddiabetes.com/

    You will probably have to pay OOP for his service but it isn't ghastly expensive. I think it helps to get another perspective and he has a good one. He made some changes for William that made a big difference quickly as his a1c's had been creeping up. He uses a Dex too I think - fyi.
     
  16. wilf

    wilf Approved members

    Joined:
    Aug 27, 2007
    Messages:
    9,652
    let's get back on topic :)

    OK, Gracie'sMom, thanks for all those details. So helpful! :)

    Looking at that list of questions and your responses and also the numbers for the past day, I am confident that you can make positive changes that will bring that A1C down. :)

    For my own benefit, I'm going to reorder the day's numbers:

    - before breakfast 7am -- 86 , 5.45u,
    - 2 hours after each meal -- 9am 240;
    - 10am snack 0.80u, then 2nd snack of 0.9u (birthday treat in class, ugh),
    - lunch 12 pm 114 3.45u,
    - 2 hours after lunch - 2pm - 180,
    - 3:40 pm snack 0.9u followed by 45 minutes of swimming,
    - 6pm--234 4.8u., snack 7:41 0.50u
    - 2 hours after supper 8pm - 200
    - snack 8:27 pm 0.90u.
    - her bedtime (9pm) 239;
    - your bedtime 10pm 229;
    - by 12:30 am she has risen from the 229 to 400 which we bolus for (2 overnight)
    - coming back down below 180 by 4 AM,
    - when she wakes the next am she is 88.


    1) Where I would start, because you're on it already, is with the prebolusing. You want to ingrain the habit of prebolusing for every meal, without exception. I would suggest starting at 20 minutes - and see what the CGM is showing you. If she's not going dropping prior to eating and still spiking afterwards then keep adding a few minutes (and observing on the CGM) out to a max. of about 30 min. This will make a huge difference all by itself. Those postmeal rises (eg. from 86 at breakfast to 240 2 hours later) will come way down..


    2) Others have alluded to rise in BG in the overnight. This is common for kids having growth spurts, and you can deal with this using your basals. Do a basal test as described by others, starting 9 pm and going till 7 am.

    Make sure there are no snacks with carbs after supper, and thus no insulin except basal working. Resist the urge to correct! You will be able to see clearly what is happening with BG overnight, and once you have that knowledge you can adjust basals to correct any issues you're seeing. The pumpers on here can help you with that.


    3) I'm thinking your correction factor could be tightened up a bit, unless you've clearly seen that the 1u:100 / 1u:90 (evenings) is sufficient to bring her right back into range. If it were my DD I'd be using 1u:80 and 1u:70 (evenings) - target BG for corrections should be 100.


    4) The lunch bolus could have been a bit bigger (about a unit more).


    Overall you are already doing a lot of things right, but the big issues in 1) and 2) above will make huge changes in BG once you've satisfactorily addressed them. 3) and 4) are finicky things that are worth considering but won't make the difference that addressing 1) and 2) will.

    I would start with a chat with DD, explaining that you're needing a firm commitment to be prebolusing all meals starting tomorrow. You can explain that as her BG comes down into range she will be feeling a lot better.

    Then when you're ready to do the basal test let folks here know and they'll help you figure out what the numbers you're seeing mean.

    I commend you for your commitment to your DD, and for taking the time to so quickly get all this info up here. My prediction is that the next A1C will be well below 8 if you're prebolusing and the night-time basals are working right. Good luck. :cwds:
     
  17. GabriellasMom

    GabriellasMom Approved members

    Joined:
    Apr 27, 2008
    Messages:
    232
    I didn't read through all of the posts so this may have been addressed already. Generally, doctors mark it as uncontrolled rather than controlled so that the insurances will continue to pay for CGM supplies. A great number of insurances will drop CGM coverage the second it switches from uncontrolled to controlled.

    We recently changed endos but we found with both our old one and our new one our endo was only as aggressive with my dd's D treatment as we asked them to be. I speficially ask.. what can we do better? What would you do differently? I don't accept the one size fits all answer, I'm constantly looking for ways we can improve the way we manage dd's D and I make sure that our endo is reminded of this at every single appointment. Trying being as direct as possible with your endo and your desires from them. You definitely need an endo that fits your needs and is willing to help you improve or give you ideas and suggestions.
     
  18. Gracie'sMom

    Gracie'sMom Approved members

    Joined:
    Aug 26, 2009
    Messages:
    1,039
    Wilf --

    Thank you for looking at all of our data. They are great points that I will be putting into practice this week . . . I really appreciate the help.

    Thank you also to everyone else for your pointers, hopefully this will get us moving again in the right direction.
     
  19. Toni

    Toni Banned

    Joined:
    Sep 14, 2009
    Messages:
    2,882
    Do not worry about the "uncontrolled" box being checked. Both endos have always had "uncontrolled" checked as part of her diagnosis. I don't know if she fills that box out for all Type 1 patients; I would think she does. We have always had good A1cs; her BS have always been volatile. We are usually in the low to mid-6s, have even reached high 5s occasionally and Uncontrolled still part of her dx. We are able to keep her in the low to mid sixes by testing two hours after every meal and adjusting, and we do overnight testing with corrections/adjustments every night. 2:30am to 3am check every night. And through the night if necessary and if we don't sleep through an alarm at some point. Also slightly overbolusing dinner if she is home by increasing the ICR by one point helps greatly, as the 6pm through 3am timeframe is the most challenging period of the day. At the two hour postprandial check, if she is too low, we can add carbs. We were able to do this without cgms. We are fairly new to cgms. Cgms has only improved spikes and we catch more lows; her A1c did not change with cgms so far. Yes, I'm sure there are many who do all we do and still have higher A1cs. And her body may not cooperate as well as it does now and she may have higher A1cs in the future. But with the help of Dexcom, we are better equipped now to manage her blood sugars. I would try if I could to get a cgms to help you. I know it will bring your daughter's A1c down and help you manage her blood sugars. I would choose cgms over a pump if I had to (she would never give up her pump; however). It's that effective.
     
  20. Toni

    Toni Banned

    Joined:
    Sep 14, 2009
    Messages:
    2,882
    Typo: Overbolus by DECREASING the ICR slightly, as in 1 to 13 as opposed to 1 to 14.
     

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