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Newly diagnosed---worried

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

  1. Ashti

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    Hello everyone,

    I just read the post from beginning to end again. It is like reading a mystery novel. It is certainly an interesting technical puzzle. (I'm sorry that it involves real people and the stress and worry that goes with it.)

    For a minute I wondered if the Levemir had gone off, and only the boluses work for a bit then wear off sending bg up. But waking at 86 is pretty good indication that Levemir is working. (Or perhaps her own re-awakened beta cells pulled her down over night.:cwds:)

    At least the morning 86 lets us know she is certainly not stuck high.
     
  2. Lisa P.

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    I am not good at seeing patterns in numbers, even for Selah, so no help here, although everything I've seen before seems very credible and Wilf has pointed me in the right direction more than twice.

    My two cents is that with a smaller child, eating decent numbers of carbs without pre or overbolusing really can give you those numbers without anything else being wrong. I'm not recommending a new person try doing those things, mind you, but I can tell you that if I gave Selah (who is probably around 30 pounds now, so way smaller, but still) 60 carbs at once and then her insulin, she would definitely go above 400. Every time, no doubt at all. And if she got to 400, resistance would kick in and keep her there awhile. Of course, she's not honeymooning either, and it doesn't seem likely it's just this since there's a big drop before the rise, but for what it's worth. .
     
  3. wilf

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    The above are two really good points.

    What was the last time the Levemir was replaced, or are you still on your first vial? Any chance at all that it's off (from heat or cold)? I did once see someone with numbers like yours when the basal insulin had gone off. Though as Ashti points out, yesterday's excellent morning number would speak against a basal issue it is worth considering.

    And did you start prebolusing the way I had suggested (giving the insulin abt. 15 minutes before the meal)? If you are giving insulin after her meals that alone can cause huge problems, as the sugar from the digesting food hits the bloodstream long before the insulin starts working.

    My bet is still on rebounding to explain what you're seeing, but both of the above possibilities merit consideration. More frequent testing at 1-3 hours after her meals today will really help our understanding.

    Back tonight. :cwds:
     
  4. saxmaniac

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    I'm not so sure about the rebounding, but it's still a possibility, I would say I agree if the BG is dropping, shorten up the interval to less than an hour if you think a low is going unnoticed. 1-4 hours after a meal is most critical. No need to test every 30 minutes all day, don't burn yourself out!

    For what it's worth, my son has delayed digestion like this all the time - he can start spiking at the 2 or 3 hour mark without any intervening low, so those are not rebounds, Reducing the carb load, even temporarily, will help us figure out whether it's a basal issue or not more easily.
     
  5. wvchinacat

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    I've been trying to read thru all the posts - but have a very needy 4 year old climbing on me :D - anyhow . . . I am so glad you found this board. The first few months can be so overwhelming and even with reading everything out there and feeling like you are are doing everything right - it sometimes just takes time for her little body to get back to using that insulin well. I remember in the beginning our endo did not want us to bring Willow down too quickly and we stayed in the 200s for almost a month post dx while he adjusted her doses. She quickly became so sensitive to the insulin going from needing a very high amt in the first month (similar to what your mention above) to needing almost less than 1/2 that as her body went into honeymoon. So not to take your endo's side - but possibly your endo is being conservative bc she as seen how children go into honeymoon? I do not know. Also - once Willow began becoming more sensitive to insulin - it only took about a .5 unit to bring her down 200 points and we would literaly have to wait until her bg rose up so that we could correct. I remember that time in early dx being very frustrating and feeling like I was not doing waht I was could. Helpless. You are working so hard. She is getting insulin - and her body is getting better - but this will not happen overnight. Give yourself a break, come here - ask questions, get support and take it one day, one insulin dose at a time. If her numbers stay too high for too long check for ketones - if there are ketones - you have a different story altogether - at that point you should be talking with your endo office about the steps to take at that moment.

    I am sorry this beginning is so stressful - I remember the heartache, I remember the late nights, I remember the struggles . . .all I can say - it's gets easier and it feels more normal . . . hugs
     
  6. Christopher

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    I have to admit I am with Scott on this one, I don't see this as a rebound effect (sorry Wilf). The OP is testing ALOT and I have not seen any really low bg numbers (I looked through all the posts but I may have missed them). Sorry you are not getting what you need from your endo, but I think finding a good one (or CDE as Darryl suggested) who can help you with this is the best way to go. Good luck. :cwds:
     
  7. Lisa P.

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    Oh, and Levemir definitely didn't work the same as Lantus for us, definitely had to do two doses and had a period of overlap, it got way too confusing for us and we tried it a year in.
     
  8. Lisa P.

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    Prebolusing can be scary, if you're not comfortable with it yet I agree that it's easier to reduce the carbohydates for awhile. You're still on a roller coaster, it just makes it more the kiddie coaster and less the wildest ride at the park.

    For us, for example, a carb will bring Selah up about 10 points, all other things being equal (I think, haven't checked in a long while). So if she has a meal with 20 carbs, if I'm half wrong she'll be 100 points higher than I want -- she'll hit 300 if I'm keeping her target range loose and high because she's young or newly diagnosed.

    But if she has 60 carbs and I'm half wrong, she could hit 500 (although she probably won't, with honeymooning and correctiongs).

    It just makes it so much harder on me in the first days.

    We had a nutritionist who recommended Selah (at 18 months) needed 140 carbs a day, every day. This really messed us up, I remember being on the phone to the CDE telling them we were having to stuff her like a duck. We let her eat to taste, which to her was 70 to 100 carbs a day, and things got a lot easier. When we finally saw the endo, he said that was just fine if she's happy with it.

    So, for a little while, adding lean meats and veggies and things like pickles, black olives (Selah lived for black olives the first two months, very expensive diagnosis!) won't hurt, as long as the child is still happy with the meal given.

    Last nosey note, I completely understand not wanting numbers in the 400s and 300s. I got sick of being told they were o.k., too -- they aren't o.k., they make my kid feel crummy. But, especially with a little one, you will see high numbers and low numbers a lot. You fix it and move on. You probably know that already, but it's hard sometimes to accept, when you're trying to do a good job on the bg, that sometimes 400 actually was a good job because of all the variables and how many of them were unknown. They'd never ask someone to build a bridge with as many variables and unknowns as we've got to deal with every meal. If you work it so you get to the other side, you've won.
     
  9. rare

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    With testing that often, the lows would have to be quick and stealthy to go undetected. The cause and effect would be happening quickly in an endless cycle. From my perspective, what I gleaned from this is possibly foods digesting slowly. Besides hourly, or half hour testing, there is another way to see if there's undetected lows causing a rebound. Get some home a1c test kits. They can be found at stores like Walmart and they're fairly inexpensive. With testing that often, doing a home a1c would be an excellent way to see if it matches the meter average. If the a1c is lower then you'd know that there's lows you've missed.
     
  10. Sarah Maddie's Mom

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    I'm confused. If the rebound causing lows are, "quick and stealthy", then how would they really impact an A1c??? I get that an A1c can point to undetected nocturnal low that aren't being caught, but they last for hours. What am I missing?:confused:
     
  11. rare

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    The lows might not be happening for extended periods of time but a constant yo-yo effect might have a possibility of showing a different number than the meter average. The other option is cgms.

    ETA: To expand upon what I was saying before, it actually happened to T since he started pumping last month. His a1c did not match his meter average yesterday. The a1c told us that he's had lows we didn't catch. They're not long lasting and he's had a rebound effect. We didn't even realize until his appointment yesterday. As far as we know the lows happen late afternoon/early evening and not overnight. His appointment is what made me think to bring it up.
     
    Last edited: Mar 26, 2010
  12. Christopher

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    I would just caution against making this leap about the meaning of the A1C. I am not saying you are wrong, but it is an assumption.
     
  13. KHM

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    We've been checking with the meters control solution; our meters new, batteries fresh. We're mostly just using one of our several meters but they're all OneTouch Ultras and they calibrate to the same standard---no meter variability.
     
  14. KHM

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    this kept me awake all night---in a situation where we believe there's too much insulin and sugars are largely high, she rebounds from lows with huge highs---what is the reasonable strategy for "interven[ing] before she has another low"?
     
  15. frizzyrazzy

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    I think you first need to find the low. This all could be speculation on our part right now. If you're testing every 30 min (good golly) and you're not finding any lows, then she's not having them. In which case, she does actually need more insulin.
     
  16. KHM

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    so much to think about and everybody brings a new dimension, thanks for adding yours. DD does receive her Novalog before meals and in the last days we've made a more concerted effort to keep the carbs 15 minutes behind the Novalog. Is this what you mean, Lisa?

    All of these things speak to the complexity of the problem. If she is over-dosed (and I think she is) then she came home from her two day inpatient stay in that condition and that just really derails a lot of my thinking.

    My problems here are:
    1. I believe she's over-medicated
    2. I could be wrong
    3. The test of whether we're right or not is scary
    4. I'd like for the test to be supervised by a competent endo
    5. I don't have one and won't for some time
    6. ...unless someone escalates and the particulars and likely outcomes of doing that are completely uncertain...and would DEFINITELY freak DD out
     
  17. KHM

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    We discarded the first vial for this reason after about 4 days. We started the third vial two days ago. That would have been a great way to solve this, though!

    We've always given the Novalog before the meal; we're now being more certain about the interval between the injection and ingestion of carbs.


    I hope I make it through today. As much as I think you're right and as comforting as that is, I'm very worried about taking this on without professional guidance---no disrespect, folks, you guys have certainly demonstrated more competence than anyone I've seen but you know...its still scary.
     
  18. Christopher

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    I completely agree with you, 100%.

    This is a great forum, with a lot of experienced people, but there is something to be said for dealing with a competent, medical professional who knows your child and their unique medical history.

    I think there is a tendency, especially in newly dx parents, to overthink things, everything, actually. I know I did it in the begining (and still do sometimes) :eek: One thing you may want to try is to stop thinking so much. I know it sounds weird. But maybe just step back, take a deep breath, go for a walk outside and stop thinking about this. When you come back, focus on the basics, counting carbs, keeping good records, planning healthy meals, weighing/measuring foods, etc. Take one day at a time. You don't need to solve every problem right now. Just my 2 cents.

    Hang in there :cwds:
     
    Last edited: Mar 26, 2010
  19. sammysmom

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    I think that is a very smart decision on your part. You are the one that is with your daughter and you know your own comfort level. All the advice given are actually just guesses on everyone elses part. One or a few of them might be right, and maybe not any. As a parent you MUST do what you feel comfortable with doing. Good for you for knowing that and doing what you feel is right.
     
  20. badshoe

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    To sum up: Brensdad = Nerd

    KHM = Brensdad^2

    :D
     

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