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Blood sugar still out of control

Discussion in 'Parents of Children with Type 1' started by mama2mm, Sep 10, 2011.

  1. mama2mm

    mama2mm Approved members

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    Hi, I'm new here and hope to one day be able to give some of the same amazing advice and knowledge I see in this forum. Untill then, I'm filled with questions and concern.

    My daughter's blood sugar ranges from extreme lows to extreme highs almost daily. Although we're doing everything we're told, something isn't right. Our endo tells us to test her, feed her, then give insulin based on a sliding scale of units. There is no "match up" of carbs to insulin and I see that a lot of people treat that way.

    Are we doing something incredibly wrong?

    *Edit My daughter is 5 years old, diagnosed 1.11.11 using Novalog and Lantus
     
    Last edited: Sep 10, 2011
  2. Sarah Maddie's Mom

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    We were never instructed to use a sliding scale so I can't help with that, but it may help others who comment to know how only your dd is, when she was dxd and what insulin you are using.

    It's good that you are seeking help. :cwds: While expecting flat bgs is unrealistic, she shouldn't be experiencing so many swings on a daily basis. I'm sorry your endo isn't giving you more guidance.
     
  3. obtainedmist

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    Welcome! How long has it been since dx? In the beginning, we were on a sliding scale for a few weeks. We requested working with a dietician in our endo's practice to do a 3 day food diary so that she could figure out the insulin to carbs ratio per meal. We wanted to be able to better match the carbs to insulin and also prepare for eventually going on the pump. I would ask your endo about ways to better match the insulin to the carbs. However, in the first few weeks, it seems that endos prefer a gradual decline in the blood sugars so the kids don't feel crummy. Hope you get some good answers soon from your doctor!
     
  4. Lisa P.

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    I may be misunderstanding.
    Are you giving insulin only based on blood sugar readings?
    Does the amount of insulin not change based on how many carbohydrates she eats?
    Or do you have a set number of carbohydrates to eat and then you give insulin for that and give more if her blood sugar was higher than a certain amount?
    Many of us started with that method and then moved on. Eight months is kind of a long time without switching methods.
    Have you asked your endo yet about changing the way you manage diabetes?
    There are several great books that can give you information about your options, and then you can go in to your endo with enough base knowledge that it helps the conversation and transition.

    I loved the Ragnar Hanas diabetes book.
    There's also "Think Like a Pancreas" and "Using Insulin" and "Pumping Insulin".

    I think the sliding scale/ set # of carbs method is often necessary at first because the lifestyle change is so overwhelming. But once you move to MDI or pumping you will, I'm sure, see a big difference in how your lives work and how your child feels. One step at a time, but I think you'll be pleased when you get on the next step!
    :)
     
  5. mama2mm

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    Thank you for replying!

    Sorry if I'm coming across unclear, here's an example of what I mean:

    Her standard day is Breakfast, Lunch, Dinner, every 4 hours. Snacks every 2 hours. Carbs are not measured, we were told to make sure there are carbs and protein at every meal. Lately, she's been waking up with a fasting BS of 200-300. So we give her a standard balanced breakfast and then give her insulin based on her pre-meal BS. Same for lunch and dinner. My gut is telling me something is very wrong with that.

    Today she slept in and woke up at 31! So we treat the low, retest her 15 minutes later and she's 125. We then give the standard breakfast and give her insulin based on that 125 reading. I feel like we're treating false #'s. She's in the 300's-400's everyday. But will also drop to the 30's-60's.

    I'm willing to work my butt off to make her feel better. I'll count every little thing if that's what it takes, yet I feel as though I'm not given the tools to do so.

    I will definitely take that book suggestion! Thank you!:D
     
  6. rakgyk

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    My son is also on a sliding scale right now, he started Lantus in January Novolog in May. We're not carb counting right now because he is still sensitive to even a very small amount of Novolog, one day last week 1 unit of Novolog made him go from 270 to 99 in 2 hours! You should ask her endo. if it's time to start carb counting, your daughter may have outgrown the sliding scale.
     
  7. mama2mm

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    Hmmm, that sounds similar! My Mia get's 2.5 units of Novolog at the most (300 or higher) and could drop into scary territory. Where other times, it won't allow her to break into the 200's.

    I didn't realize you could outgrow the sliding scale. I feel foolish for following it this long.:(
     
  8. obtainedmist

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    Talk to your doctor and tell him/her that you would like to carb count and establish an insulin to carb ratio. If they don't know what that means, you might consider finding a different endocrinologist. Are you on a 24 hour insulin as well as the fast acting?
     
  9. mama2mm

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    I am definitely going to talk to our endo. This is obviously not working. DD is on 3.5 units of Lantus (long lasting) in addition to her bolus, Novolog.

    Her scale looks like this
    <100 1 unit
    100-200 1.5 units
    200-300 2 units
    > 300 2.5 units
     
  10. emm142

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    IMO, the only way a sliding scale could possibly be maintained at any point other than a strong honeymoon would be if meals were carb counted and always of the same size (e.g. Breakfast 30g, lunch 50g, dinner 50g) and then on your sliding scale there would be a base amount to cover the carbs and a little more added for high BGs.

    I think that the regimen you are currently using is ill advised and, frankly, dangerous. That's completely not your fault - I have no idea why an endo would leave someone with such a regimen. But I'd definitely speak to your endo and learn about carb counting and carb ratios.

    Welcome to CWD! I'm so glad you found us.
     
  11. Amy C.

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    It is good that you wondered if other parents were having the same difficulty managing their child's diabetes. I imagine you were astonished to discover that parents whose child is on a sliding scale only are a little scarce around here.

    Starting to count carbohydrates and giving insulin based on the blood sugar reading and food eaten is the way to go to manage the sugars. This more closely copies what the body does.

    There are lots of books out there to read -- I would continue your education that you started by coming here by reading some of the following:


    Think Like A Pancreas: A Practical Guide To Managing Diabetes With Insulin
    and

    Understanding Diabetes - this is the well talked about "Pink Panther Book".

    Here is the online version.

    You need to start moving towards the realization that the endo should give you the tools to manage your child's diabetes by educating you, but ultimately you need to learn the ins and outs of keeping the blood sugar more or less in control. If he does not provide the education, you need to find someone who will. The endo works for you, not the other way around.
     
    Last edited: Sep 11, 2011
  12. lgouldin

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    My DD was on a scale like that the day she was dx'ed...then 2 days later we went back to see the Endo. Then the Endo reduced the sliding scale some and added the carb scale. Our Endo had me call her everyday with my DD bg numbers and she made adjustments.
     
  13. mom24grlz

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    Hi and welcome :). If you're using a sliding scale I'd recommend having your endocrinologist start you on an I:C ratio and do carb counting. This way your child is getting the correct amount of insulin based on the amount of carbohydrates they are consuming, not based on their blood sugar number. My nephew did sliding scale for a while and his numbers were like what you describe your numbers. Basically crazy.
     
  14. Melissata

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    Oh, my. I agree with Emily. The ONLY way this would work is with the exact same amount of carbs every meal. If your endo knows how much she is bouncing around on this regimen and has done nothing to change it, I suggest you look for one that will do things differently. I would suggest a phone call to let them know that you need a change, along with getting at least one of the suggested books. I would also call and set up an appointment with another endo, just in case this one doesn't come through for you. I can't imagine why a doctor would operate like this, but very glad that you came here and are asking the right questions. Once you educate yourself, and insist on the right treatment plan, she will feel much better.
     
  15. Deal

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    I'm curious if your daughters A1c is below 7? Regardless you have been at diabetes for a while now and it would make sense to move towards best practices as defined by the college of endocrinology. In your shoes I would start carb counting and logging and take that information into your endo after a couple weeks. That way he can see that you are ready and able. If he still doesn't change your regime it would be time for a new endo.
     
  16. mama2mm

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    Wow! Thank you so much for the advice. I knew something was wrong, I just didn't know how to approach it. I even asked the endo about carb counting and she said it's "too much" for little kids. Well, having out of control BS is too much for little kids!

    I'm going to insist on a change at our next visit and I'm going to read, read read. Thank you!:)
     
  17. Lisa P.

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    I hate the jump the gun but do you have access to a new endo?

    I honestly do not see how anyone can maintain any kind of safety when you are not counting carbs at all -- I mean even to the extent of being on a set number of carbs for each meal and snack.

    I've never heard of being on a sliding scale without being on a set number of carbs at meals. This seems very hazardous to me and I can't see how your daughter could feel anything but crummy all the time.

    Is this a pediatric endocrinologist that you are working with?

    I would change this yesterday. :( No yelling at you at all, I'd certainly have followed my doctor's directions and very impressive of you to look into this. But if I'm following you correctly, I would say it is urgent that you change her care as soon as you can.

    So sorry. The good news is when you get some good medical instruction things will get much better. :)
     
  18. miss_behave

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    You would give the same amount of insulin no matter what meal your daughter eats? So, a salad would get the same amount of insulin as a Happy Meal? :eek: No wonder you have extreme highs and lows! Please, please, please ditch this Endo immediately. I wouldn't even go back to this her, she's obviously clueless! I am honestly shocked, this is dangerous :(
     
  19. mama2mm

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    Yes, she would get the same amount no matter what she ate.:confused:
    She DOES feel crummy all the time. My husband and I have tweaked it on our own a bit when we feel she needs a bit more or less. I've been saying this the whole time that it feels like she has uncontrolled diabetes despite gettin 4 injections a day and being tested 6-8 times a day. Which is so unfair and unhealthy!

    Thank you for confirming my suspicions.
     
  20. hawkeyegirl

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    I agree with this. And I cannot believe a ped endo in this day and age would say that carb counting is "too much" for little kids. That's downright crazy!
     

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