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Newly diagnosed---worried

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

  1. Christopher

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    I agree, that is why I always do it.
     
  2. krossiter

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    I did read that it had been a little over a month. Where I was trying to go with that was that if I had not worked with our endo to slowly but surely increase her insulin doses, we might still be in the same predicament now as we were then -- had her body never got that "kick start" with enough insulin to bring blood sugars in line thus prompting remaining cells back to life, throwing her into a honeymoon (hopefully) Perhaps that is the problem here, there has never been enough insulin for that to happen as it seems there have been little if any dosing adjustments since the initial diagnosis. Like I said, just a different point of view for what it's worth. Good luck!

    Kim

    Kolt, 12 diagnosed 8/03, pumping MM
    Kash, 9 non-d
    Kwynlan, 6, diagnosed 1/10, pumping MM
     
  3. KHM

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    Update

    We missed the night time hourly collections last night---we have a gap between 2 AM and 9 AM. She awoke at 86, ate 45 g of carbs with 3 units of Novolog.

    My husband was "in charge" while I went out to take care of some personal medical things (imagine: I've developed an ulcer...) and missed the 1 hour post prandial but her readings since b'fast have been 275, 328, and 375 in a total of five hours since meal. An increase of 300mg/dl with 45 g of carbs and 3 units of insulin. Interesting.

    I called my pediatrician this AM, waiting for a callback where I'll review the bloating, constipation and hairloss---I know she's working hard on speeding up the endo consult we both think is best but maybe she'll do some of the other metabolic work up while we wait.

    Yeah, its a little scary to consider moving on the counsel offered here. Of course its scary to do nothing---and I came here looking for experience and I seem to have found credible resources---very happy about that. Right now, I'm gathering data and I'm thinking about her non-blood sugar issues. I haven't decided what to do yet. But it gives me a lot of comfort to know that I can ask questions and have real discussion about it.

    Thanks....
     
  4. willie's mom

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    We had the very same problems while DS was taking MDI. No matter how we adjusted we could never stay regulated more than a couple of days. We started pumping in December and his A1C has already dropped more than 2 points. Pumping was a rough start but we absolutely love it now.
     
  5. denise3099

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    So glad about that. It may be nothing--high bs cause constipation since you lose so much water in peeing, that stools become really hard and difficult to pass. But it's always best to work with a doc since thyroid issues can be lurking.

    I didn't notice if you were checking ketones or not? Definitely a must since ketone "eat" insulin and you need more insulin to bring them down. Also, you can't tell too much about the high. Wilf will respond to this, but without knowing wear she was before 9am, you dont' really know why she went high. If she was at 40 at 7am and at 89 by 9am, she was already rebounding. Feeding and giving insulin was not going to prevent a rebound in the 300s. I really wish you had a trial of a cgm since I know getting up all night is a night mare. One night of hourly bs will tell you what you want to know. Good luck. Re the ulcer, so sorry, please take care of you.
     
  6. KHM

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    Definitely. So far, we've never found more than "small" amounts of ketones.

    True enough. Hourly bs will be a good investment of effort. Thanks!
     
  7. denise3099

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    I know it's like having a newborn. But you are doing great!
     
  8. simom

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    I hope you will get the answers you need!

    As noted, there is some variation amongst children, but just to confirm the "ballpark" that Wilf suggested - my son weighs 46 pounds.
    His basal is at 6.9 units/day (we are on a pump) and his carb coverage at most meals is 1/30 (bedtime snack a little higher).

    Also wanted to echo the calls to see if you can get a CDE on the phone (or even a CDE appointment) with your new endo's office - their schedules are often not as full as the doctors and we have had uniformly positive experiences with them.

    Hang in there! You are doing a great job and you have your daughter's best interests at heart.
     
  9. emm142

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    I'm a 17 year old 120lbs girl and I'm only getting around 30U a day insulin.. I'd have to agree that it sounds like your daughter is getting a LOT for her weight. And also, I second that Wilf can work wonders. ;)
     
  10. wilf

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    Well, I'd just start the "24-hour clock" from whenever you start an unbroken string of tests. Note that the crucial tests are the 1-hour post-meal ones.

    Quick questions about breakfast - did your husband prebolus, and what was it (ie. cereal, bacon and eggs with juice, or whatever)?

    Starting numbers this morning were perfect, and in my view narrows the possible explanations for the rise in BG levels after breakfast to:
    1) low/rebound;
    2) too-small bolus plus uncovered snack.

    I'm still betting on 1).
     
  11. KHM

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    My money is on number 1 as well.

    Breakfast was toast w/peanut butter, 1/2 banana

    Lunch was about 1:45, she ate 67 g of carbs: sandwich (really high carb bread), orange, wheat thins, her preprandial bs was 375. Her pre-lunch Novolog, then, was 7 units (4.5 for carbs, 2.5 correction). At 3:15 her bs was 178, 139 at 4:00, 310 at 5:00, 354 at 6 PM and her 6:45 preprandial bs was 429. She's having pepperoni pizza for 60g of carbs and her dose was 7 units. She's eating...

    Seeing 429 on the meter is TOUGH and boy is she ever feeling it: very oppositional and fractious.

    Spoke with pediatrician who agreed to order metabolic tests, the whole gamut, to at least have that rolling when we do see new endo. We're trying to address abdominal distension and constipation with miralax... should we rule out the frightening co-morbidities, I think I can talk DH into trying the reduction of insulin without an endo/CDE direction.

    I have a CDE contact from our diagnosis inpatient stay; she's been very kind and continues to be concerned. I will ask her to advise.

    Thanks again.
     
  12. 2type1s

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    Hi!!! I've read everything and agree with lots...wilf is GREAT, and very smart. Rebounds from undetected lows cause stubborn, persistent highs. I'm wondering if the endo did a blood panel when she was diagnosed? My daughters were both screened for thyroid and celiac antibodies at diagnosis, and we knew withing a few weeks that Zoe carried the antibodies for autoimmune thyroid disease. we were told she COULD develop thyroid disease at some point in her life. She needed medication within 6 months. One symptom of thyroid disease is hair loss (also fatigue, digestion problems, weight loss/gain, irritability, poor cocentration, etc). zoe has many of these symptoms for 2 years prior to her T1 and Hashimoto dx. Since being on medication, she has none of these and is an honor roll student. I think a full work-up is definetly needed!
     
  13. wilf

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    This is exactly what I was expecting to see. :(

    My read of these numbers is that she went very low and rebounded between 4 and 5 pm. At 4 pm (just over 2 hours after lunch) she was back in range, having dropped 235 points in that time. That drop did not stop as there was still about 1/3 of the bolus/correction to come - it continued and she went low hard and rebounded. Everything after that is the rebound.

    For the record if we assume she needs a TDD of 12 units then a 1 unit correction would drop her BG by 150 points (I'll introduce you to the equation I used to calculate this later after my young one is in bed). At 4 pm she still had about 1/3 of the bolus/correction working, enough to drop her over 300 points and her BG was only 139. You can do the math.. :(

    I strongly urge you to follow the advice given yesterday. She needs far less insulin, and her health is being endangered by the overdoses she's getting.

    Best of luck with this. :cwds:
     
  14. wilf

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    I'm worried about a likely second hard low today from what I'm estimating to be another overdose of insulin, this time for supper. Please if she gets below 150 (I'd expect her to be there by about now) start measuring more frequently (say every 20-30 minutes) and then you can watch her go down - and hopefully intervene before she has another low.
     
  15. KHM

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    I just checked back in---she was down to 120 at 9:00 pm and up to 240 at 10. Just took the next hourly: 293. I 'm assuming this is the rebound.
     
  16. sooz

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    Wilf I definitely think you are the expert here and even question whether I should ask since I am a rookie/grandma..but I was wondering if the high late in the afternoon could be that her lantus is wearing off since I think she gets it around 8 or 9 pm. Could that be a factor at all? Just wondering..:eek:
     
  17. wilf

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    Unfortunately yes, another rebound.. :( But don't feel too bad. You're quickly building an understanding of what is happening, and why your daughter's numbers have been off.

    Tomorrow if you're going with the same boluses and corrections (which you know I would advise against), then please measure 1 hour after her meals and then every half hour out to 3 hours. You'll see it all unfold in real-time and with the more frequent measures you'll be able to treat the developing low before it gets bad.

    You and your husband have some decisions to make. I'm thinking you must have some connections in the medical community that you can draw on to give you some independent input if you're not comfortable making adjustments on your own with our support (and in the absence of the support your dud of an endo should be providing).

    But you knew there was a problem, which is why you came here. And we've identified the problem. You can confirm it tomorrow with more frequent post-meal measuring, but based on today's numbers I'm certain that we've found what the problem is.

    You're very lucky your daughter still has a very healthy rebound function going. :) Later on this tends to fade in many children with diabetes, at which point the bad effects of lows that we learn and hear about are experienced.

    I'm glad you found us and we've caught this now. I'm signing off now as I have to prepare and rest up for an all-day meeting for my work tomorrow. Will check back in later in the day. Good luck. :cwds:
     
  18. wilf

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    It's a great question, and normally if we were fine-tuning an ok insulin regimen this is something we'd look at.

    But in this case something is hugely amiss, and has been for weeks. We have the same pattern after every meal today (except we missed bracketing the low with measures after breakfast, because of too-late testing), of the post-meal rise in BG dropping into range and then BAM! numbers that are high and rising from a rebound after a hard low.
     
  19. KHM

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    My husband is scared more witless (serious reservations about that syntax...) than I; he's not very clinical. I'm the stay-at-home-Mom who has been on 24-hour duty since Day 1---he's been earning, shopping and bringing home the bacon while I've been learning and watching. He's on board for manipulating as we've discussed here after we've removed the possibility that there is a serious co-morbidity that is mimicking rebound. But I have very little doubt about it.

    And since that's the case, I'll watch her ever more closely to catch the lows and help her out until we have the metabolic work back (do those labs take long? I should know but I don't). And then, Wilf, THEN you will see some KHM freaking out... thank goodness I hadn't succumbed to the pressure to put her back in the classroom just yet.
     
  20. Jacob'sDad

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    I don't want too look through all the posts again, so forgive me if this has been brought up, but the meter you're using is accurate, right? If it is always reading, say, 40 points high, it would explain why you are having a hard time locating the lows that are triggering rebounds.

    Or is it possible that rebounds are somehow being triggered even though BG is not getting particularly low?

    Just throwing some things out there...

    I do agree with Wilf that once that BG starts a downward trend like 170 to 130, you're really going to have to check often to find out where the bottom really is.
     

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