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Newly diagnosed---worried

Discussion in 'Parents of Children with Type 1' started by KHM, Mar 24, 2010.

  1. Becky Stevens mom

    Becky Stevens mom Approved members

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    Hello and welcome! I am so sorry about your daughters diagnosis and the difficulties your having. Yes please do find another endo, it doesnt sound like this one is listening to you and being helpful enough. Has your daughter been having problems with the bloating and constipation for awhile? Does she ever have diarhea? Feel unwell? Im a little concerned about celiac and I think that a blood test should be done for that ASAP. That could be part of the problem with her not gaining weight. As far as her blood sugars, it sounds like she needs more basal insulin. Do you split the dose? Many people on levimir have to have the dose split. We use lantus and dont split the dose but many people find that they have to with this as well. For the endo to say silly things like "make sure that shes not sneaking food" and "make sure you count carbs" Well I dont think to highly of this endo. Let us know how things are going please
     
  2. KHM

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    I'm going to crunch some numbers for you to check the dosages but want to make sure I'm understanding this correctly:
    - she weighs 44 pounds (ie. 20 kg
    - gets 9 Lantus a night (at what time?)
    - her carb ratio is 1:15, and she's eating maybe 180 g carbs a day (so my count is boluses of about 12 units a day)
    - you've got a sliding scale for corrections, and I'm assuming from what you're posting that corrections may total up to 5 units a day if not more.

    Could you please add up all the boluses and corrections for each of the last 3 days and let me know what that comes to for each day?

    Are you pre-bolusing? If so by how much?

    Finally, could you let me know the times you would be measuring blood sugars in a typical 24-hour period.

    Thanks, and welcome aboard.. :cwds:[/QUOTE]

    MY thanks to everyone, especially you with regard to this specific question.
    approx 20 kg is correct

    She takes Levemir once daily, between 8 and 9 pm; 9 units

    the language of bolus is not one we've used but I'm assuming you mean the pre-meal (Novolog is to be administered 5 - 10 min before meals) insulin based on carbs alone---that is, not including the correction for blood sugar. If so, then you are correct that her boluses would be close to 12 per day.

    Your assumptions regarding corrections are on the mark. Her total Novolog for last three days: 16.5, 13.5, 19.5.

    No pre-bolusing. Its never been discussed (which is not much of a reason, based on my experience), and for some reason I've got a niggling feeling about that being a problem for Novolog.

    We measure her blood sugar close to these times each day, unless there is a low, activity on the agenda or if she appears to be having hyperglycemic issues:
    8:00 AM upon awakening
    ~8:30 preprandial
    10:30ish postprandial
    noonish preprandial
    2:30 to 3:00 postprandial
    ~4:00 to make sure she's not high for pm snack (we eat dinner late)
    ~7:00 pm before supper
    ~9:00 for bedtime info
    2:00 AM

    thanks! By the way, these are the most cogent questions posed to me thus far. It feels good to be discussing important information.
     
  3. Omo2three

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    welcome to CWD...sounds like you have been doing your homework.

    Sometimes it helps if you just post the data...
    like time, carbs eaten, bg, bolus...
    Curious if she is always high? are any numbers within range?
    The TDD total daily dose is helpful for figuring out the math/ formulas
     
  4. badshoe

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    Hi welcome. You will get the hang of it.

    If you are consistently high you need more insulin. How much is the art of the deal. Hopefully the new endo can teach you how to adapt and adjust. That is a big part of the deal. It is tough at first to find the balance. The pancreas is still making some insulin.

    I would call in and see if you can get in a dropped appointment sooner.

    Specifically ask to be trained on making adjustments. In fact call the practice and ask if they have a nurse educator who can come out to the house.

    Keep calling sooner or later they will get you in just to get you off the phone :)
     
  5. Denise

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    Welcome to CWD. I'm glad you found us. I definitely think you do need to be more aggressive with insulin but I'm unfamiliar with sliding scales. We use something like BS-120/80 for our correctionsIand the pump does the math for us now thank God). We were sent home with a basic guideline and they called me every 3 days for the first 2 or 3 weeks. I'm surprised the endo is so laid back. Our docs at Riley's were very interested in hearing from us and wanted numbers sent it frequently. I didn't see you say if you were testing for ketones for all of those high numbers....?

    Hang in there. If you gather the courage..and be vigilant..your daughter will be all the better for it.
     
  6. BrokenPancreas

    BrokenPancreas Banned

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    The behavior of your endo is beyond horrible.
    I'm shocked actually.
    I would report her or him to the higher ups.
     
  7. frizzyrazzy

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    what' you'd see from a child getting TOO MUCH insulin is lows (which you'd miss) followed by consistent highs. Rebounds.

    She's taking approximately 1u per kg of weight. That is a LOT of insulin. For comparison, my son who has had diabetes almost 5 years and makes none of his own insulin, takes about .65 u per kg of weight, which is on the low end. 1u per kg is a lot of insulin for a child who's own pancreas is probably still producing it's own insulin. We'd all expect to see under .5u per kg. At least, I would think so. Unless she's still insulin resistant from DX, which can happen, but stll, I would have expected that to go away by now.

    Wilf will crunch the numbers for you - he's good at that - and while no one here can give you medical advice we can all say what we'd do, but no one would want to give you the wrong advice. Knowing this info, i'd probably say check an hour after she eats to see what's happening. If you're dosing AFTER she eats it could be that the insulin and food are not matching up. Novolog does take 15 min or so to work so the optimal time to give it is about 15 min before eating. If she's eating things that are slow to digest she's ok, but if she's eating things that are quick then that food gets to her system, shoots her bg up and then the novolog hits bringing her down low.
     
  8. GaPeach

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    I am sorry that your current endo is not being supportive. Most endos have you fax BG#'s daily for a couple of weeks, then weekly for a while until the numbers are in range and you have gotten used to making adjustments (initially with there assistance).

    But with your background as epidemiologists, you will be amazed at how soon you will comfortable making the changes yourself.

    Ditto what FrizzyRazzy said! The reason it may be too much insulin is that she could be dropping low and then rebounding. The best way to check for this is frequent BG checks. I know you are testing her about 9 times a day now. Can you post a few days of numbers?

    Time of day, BG, any carbs, bolus (dose for the carbs), and correction if given.

    Sounds like you are ready to try and improve this situation. From your posts - I believe that you can do it.

    Trust Wilf. :) He is great at crunching numbers and giving you the basis for his suggestions.

    Most importantly, frequent BG checks will be your safety net.

    Two great books are Using Insulin by John Walsh and Think Like a Pancreas by Gary Scheiner.

    I'm glad you found this forum. I hope you can get in to the new endo very soon.
     
  9. saxmaniac

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    I would just like to add here:

    1) Your posts show an excellent understanding of everything. Believe me, you are ready to make your own adjustments, with the blessing of an endo or CDE. It's fine for them to want to be apprised of what you are doing, but it is not right for them to say NO. If an endo does not support you 100% -- that is, you wanting to take on more work and make things better -- then they are to be replaced immediately.

    2) During the honeymoon IS a good time to learn to adjust, because the TDD is going to go down quickly and then back up, and then WAY up. Might as well learn the basics now, before it gets harder and more unpredictable.

    3) I agree there is a good chance could be too much insulin. You will need to do a good deal of 2-hour pp checks to be sure.
     
  10. Brensdad

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    Ditto.

    The only thing I have to add, and it's just my advice, is to try and avoid standard deviations. I can tell that you will both do very well with the statistical analyses piece, but don't let the "average" number fool you (and it appears it won't). If the numbers ran at 300 half the day, and 80 the other half, well that would be a very nice-looking average, but it's not ideal.

    Swings will happen period, so the trick is to just minimize the time spent above the range. Don't panic if you see a 250 or 300 BG an hour after a meal. Diabetes does that, and you'll make yourself loony if you try to time your pre-boluses to avoid the spike this early in your new reality.

    I hope that didn't sound presumtuous; but I'm a nerdy statistical type, and I fell right into that trap when Emma was first diagnosed. To this day, I still export the readings from her sensor to a csv and then run a regression to find trends.
     
  11. wilf

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    Ok, this may seem counterintuitive based on what you've been told so far but my best guess is your daughter is getting too MUCH insulin. Based on what you've posted she is getting 22.5 to 28.5 units a day - this is about as much as my 13 year old 117 pound daughter is getting. Mind you my daughter is quite active and eats very healthily, but I'm not getting the sense that your daughter is going to be all that different in that regard. My sense is that your daughter could be getting about twice as much insulin as she needs right now. This is obviously not good.

    What happens when a child is getting too much insulin is they'll go low, and then the body pumps out a variety of hormones to stimulate an emergency release of sugar from the liver and to raise insulin resistance (to protect against further lows). The emergency release of sugar causes a "rebound" (as blood sugar goes from too low to too high), and then the increased insulin resistance will make it very difficult to get those high blood sugars back down. So you give even more insulin next meal to try to bring her down..

    The increased insulin resistance from the last low will finally wear off (usually 6-12 hours after the last low), but because she's gotten a lot of insulin to deal with her high blood sugars BAM! she goes low again and the cycle starts anew. It is very hard to catch this sort of cycle with random finger pokes - you would need her on a CGM to know for sure. But based on my experience that is my best guess at what is happening.

    Part of the problem is that she's getting her Levemir at night. Levemir tends to have a bit of a "peak" when it's coming on, which causes a drop in blood sugars a few hours after injection. For her this peak is coming on when she's sleeping, raising the risk of any lows going undetected.

    Based on her weight my sense is she'd need maybe 10-15 units a day in total.

    So here is what I'd do if I were in your shoes and it were my daughter:
    - I'd switch to giving the Levemir in the morning, and drop the dose to 6 units (to transition I'd give just 3 units tomorrow night, then 6 the next morning);
    - I'd give no corrections tomorrow or the next day;
    - for meals I'd switch to a 1:30 carb ratio, and I would prebolus all meals (giving the insulin 15 minutes before she eats).
    This would see her going to a total of about 12 units a day as the Levemir comes down..

    Now this is just what I would do, and any time you make a big switch like this there's some tweaking and fine-tuning that's needed to adjust once you see how things are working out. So if you think of going this route then I'd suggest posting your numbers a couple of times a day (all boluses, carbs, and blood sugar measurements with the associated times) and we can help you adjust as you go.

    You'll have seen that some others are thinking she's getting too much insulin too. We are not doctors but we're parents with lots of experience. The worst that can happen if we're wrong is that your daughter spends another couple of days high. But if we're right, then you can get off the low-rebound-high cycle and start anew, with an insulin regimen that is more appropriate for your daughter.

    So I'll leave this with you. Glad you found us. Good luck! :cwds:
     
    Last edited: Mar 24, 2010
  12. KHM

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    Ha! Not presumptuous and believe me, we know our BG distributions are far from normal. We love our modes around here. And as skilled as we may think we are, we do remind ourselves (from time to time) of the difficulties of using population and sample methods in looking at individual data.:eek:
     
  13. KHM

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    I've appreciated and found lots of insight in replies from everyone; seriously, this is the most help I've had in the whole month.

    I think I will give some thought to the reduction of insulin; it makes a lot of sense. I suppose the one niggling question I have is how high the highs might go if she's not actually rebounding.

    Over the next day or so, I'm going to really scrutinize her blood sugars---even more closely than I am now, and please don't ask how many test strips I've gone through already-- and then I'll have a solid, frequent and robustly distributed set of numbers to compare against the change in dose. It seems a big change and a bit scary but likely worth taking a deep breath and checking out...

    THANKS SO MUCH TO ALL OF YOU.
     
  14. frizzyrazzy

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    how high? higher than what you're seeing now. ;) You'll know pretty quickly.

    I would just check at different times to see if you're missing something. if you're always checking at 2am ..check at 1am. If you're checking 2 hours post meal, check 1 hour.
     
  15. linda

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    Hi-welcome-didnt read all posts , but saw some talking about pre bolus etc. is your child MDI or pump?

    It is never a perfect science, but it sounds like needs more insulin! With those high #'s, the endo should be doing some adjustments!

    Also your child will feel better! Hang in!
     
  16. Ashti

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    Wilf's scheme of reducing insulin is a good place to start because you don't have to wait to begin it, and it will answer that question in a couple of days.

    Looking into thyroid issues (hair loss, constip., and unpredictable blood sugars), or other possible explanations with blood work could then be done at the next endo appointment.

    It is a big step to reduce insulin by that amount, but we have seen it solve similar problems for a couple of children on this site, so is certainly worth a try.

    Good luck!
     
  17. wilf

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    If you're worried about the possibility of excruciating highs (in the event you reduce insulin dosages and she's not been rebounding), then I might suggest something that has worked for other parents that we've "talked down" from insulin overdoses.

    It goes like this: at the same time that the insulin dosages get dropped try for the next 36 hours having much lower carb and lower glycemic index foods/drinks for the meals at your place. So lots of water to drink and meals of meat, raw and cooked veggies, raw fruit, nuts, and everything brown (bread, flour, rice).. If a meal only has 20 g carbs, then even if the carb ratio is way off a child won't very high because it's not that many carbs.

    Anyhow, you probably got way more feedback than you were bargaining for today.. :rolleyes: Give it some thought and do what you think will work best for your daughter. And whatever it is you do, please keep us posted. You're part of the family now.. :cwds:
     
  18. KHM

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    In terms of timing, were I to collect hourly blood sugars tomorrow and the next day and then move to reducing the total dose of insulin, are you suggesting that I first reduce the Levemir (i.e., 3 units Levemir the night before first morning Levemir of 6) and on that same day reduce the insulin to carb ratio by about half with no corrections? Or do you mean to first reduce Levemir, keeping the same Novolog:carb ratio with no corrections, and then after the second day reduce the Novolog:carb ratio?

    I'm simply wondering if you mean to make the Novolog and Levemir changes simultaneously...sorry it was so difficult to articulate...
     
  19. KHM

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    Thanks! We're MDI.

    As far as I'm concerned, I don't have an endo. She's dead to me.
     
  20. wilf

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    I'd be doing it all at once. So if I was wanting to get started right away I'd drop the carb ratio effective the next meal and stop all corrections. The Levemir needs to be tapered so the next night's dose I would drop to 3 units, and then go to the 6 units the next morning.

    The problem with the Levemir is if you just switched from 9 at night to 6 the next morning, there would be a period of overlap where there's 15 units of Levemir working and that has to be avoided..
     

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