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Newly diagnosed---worried

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

  1. KHM

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    Hi---newbie here! I'm hoping for some insight from parents of kids who had *really* difficult transitions since diagnosis.

    My daughter was diagnosed a bit over a month ago. In the ensuing month, despite having counted carbs diligently, recorded everything, read everything ever printed about Diabetes Type 1 in kids, DD continues to have blood glucose levels above her target range about 80% of the time. Her blood glucose levels have been over 350 for four or five hours in a day, some times more than one long period per day... to be short: she is hardly ever in her target range and when she is over she is WAY over the maximum of her target range.

    She is so high so often, in fact, that she has been unable to go back to school (first grade)---her school health management plan would land her in the health room for most of every day.

    Her endocrinologist will not consider any possibility other than our inability to count carbs or my daughter eating on the sly... I find neither of those possibilities even close to adequate to explain the consistency of her high BGs. Needless to say, we've decided to take up with another endo but as she is not ill, we have a long wait---until the end of April.

    The idea of waiting so long to get her numbers down is really unsettling to me. I would like to know:
    1. have any parents had similar experiences with stabilizing BGs toward more acceptable levels when first diagnosed?
    2. What should I do? I am seriously considering taking her to an ER the next time her BG is over 350 for more than an hour.

    We're on Novolog and Levemir; the endo has made one adjustment to the Levemir since initial assessment and that was an increase when her BGs were VERY very extremely high.

    Help?
     
  2. Sandy's mom

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    What is her weight? What is her TDD (Total daily dose) of insulin? How many units of basal insulin?
     
  3. frizzyrazzy

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    hi and Welcome.
    I'm so sorry your first month has been so rough.

    Simply put, she needs more insulin and the adjustments that your dr have made have been inadequate to do that. Are you sending Blood Sugars to your dr every day? week?

    Why not give us some of your insulin doses, carbs , BG, etc and people might be able to make some suggestions. But in the end, it's going to be up to you if you're feeling comfortable enough to make these changes on your own.

    Diabetes is a disease where you will end up changing dosing on your own, but usually that's something that you endo will help you learn, and certainly not throw you into the fire in your first month to learn.

    so post away and people will help you learn what your endo seems unwilling to teach you. :)
     
  4. Toni

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    Dn dx'd at 8 and in the hospital 11 days. They would not release her unless they could get her BS out of the 300s. Hospital food they gave us had carb counts (which I now know were way off). She was on NPH and Regular. Nurse actually accused us of feeding her on the sly. We met with the Medtronic Rep while she was in the hospital (there happened to be a support meeting, which is really more like a Minimed sales meeting right in the hospital). A Type 1 himself, he told us to get her off NPH and on Lantus and Humalog. Still could not get released from the hospital. Endo on duty switched with another endo. She upped the NPH drastically. Lo and behold her numbers came into the 200s where they stayed, vacillating between 2 and 300 until we were able to go to our appointment with an endo in the City. Immediately within one or two weeks her numbers were fantastic, on Lantus and Novolog. Investigated pumps right away and pumping within four months. However, it was her CDE who got her numbers down. We did carb count, follow instructions. We had no idea how to adjust insulin and would just fax numbers in. So you need a good endo team who will really step in and help adjust the numbers and train you. Oops, see you are on MDI. You need to adjust your insulin. If high all the time it is the basal. She needs more insulin. Your endo should give you guidelines on how to do this, when and in what increments.
     
  5. Lisa P.

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    Are you correcting highs? What guidelines are you using to do that?
    (Oh, yeah, your endo is wrong, obviously.)
     
  6. Brensdad

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    Lots of folks will offer lots of advice. You've come to the right place. I'm not going to add any advice other than to reassure you that there are no stupid questions, and there is no "newbie" nonsense around here.

    Ask a question, check out the responses, and ask more questions. It won't be long before you're answering them for others that are new to diabetes.

    Oh, and just jumping on to complain about not sleeping all night, relatives that don't get it, and schools is OK too.
     
  7. KHM

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    Thanks---follow ups

    Thanks everyone---here is some of the additional information that might help with guidance:

    DD weighs 44 pounds (4th percentile ::( ) . Our insulin is given on sliding scale so she gets 1 unit per 15g of carbs with a guideline of 50 - 60 g per meal and snacks at 10g or less. There is a correction factor of 0.5 units per 50 mg/dl over her max of 150. She also takes long-acting (24-hour/basal) Levemir: 9 units per night.

    Endo reviewed her numbers at 1 week follow-up and has declined interim reviews of the data. We have another appt in 2 weeks but I'm disinclined to see her again. She "welcomes" email for questions and when I summarize her numbers (ranges, max, min, proportion of observations out of range) she simply tells me to make sure she's not sneaking food and that we're counting our carbs correctly. I'm not kidding. She has said that four times.

    Additionally, her hair has begun to fall out: report to the endo got virtually no reaction except that she thought it was "nothing" but would do a thyroid test at next visit if I wanted her to...? Finally she has begun to have bloating and constipation and I think this could be related to glucose absorption or other co-morbidities...

    Help?
     
  8. KHM

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    PS

    I forgot to answer regarding corrections: other than mealtime corrections we have not been instructed to give insulin for high observations.
     
  9. Toni

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    Confused about the correction factor? .50 will bring her blood sugar back to target of 100 it sounds like? That would mean 1 unit of insulin would lower her blood sugar 100 points? You MUST check this; I am guessing. So if she is 200, you give her .50 to bring her to 150? This sounds like our very first target so it makes sense to me. I would go ahead and correct if high. But would do what we did in the beginning. We did not correct between meals. We corrected the high with the meal. I think this is wise. However, we were allowed to correct if high after dinner when the insulin was gone or overnight. Ask the endo for a correction factor to do this. Overnight, insulin sensitive so we used less insulin. We would correct 1 to 150 with shots; 1 to 120 with pump (meaning, using one unit of insulin to bring blood sugar down 150 points at first, then using one unit of insulin to bring her blood sugar down 120 on the pump. If in doubt you can give half corrections at night. That would be safe and bring her more into range.
     
    Last edited: Mar 25, 2010
  10. KHM

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    I believe we are interpreting the correction impact as you describe.

    I would *totally* be happy to give correcting doses but not without an MD order, at least initially.
     
  11. Rusty

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    You may want to consider looking for another Endo.
     
  12. liasmommy2000

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    Hi and welcome, though I'm sorry you had to join us here. But if anyone can help, it's the people here at CWD!

    There are people much better at giving detailed advice then myself so I won't say much. However will say that I think the endo is just not being aggressive enough. I would think she simply needs more insulin (and you need a new endo, but you know that).
     
  13. sarahspins

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    That's a great idea, especially if you aren't happy with your current endo, but just let me throw this out there - sometimes diabetes is just difficult. No matter what we do sometimes it just doesn't work out like we want.. it's just part of dealing with the disease. It seems to me though that it's entirely possible that there is something lacking in your insulin regimen... but some doctors seem to be overly cautious about making changes, especially in the beginning. I think they want to see what is working along with what is NOT, so that it can make it easier for them to suggest what to do.. while you may quickly see a pattern, they might be slower to catch on because they're not around your daughter 24/7.

    Are you able to notice any pattern in the highs? Levemir does not last 24 hours, so if you are only giving that once a day, it's possible that it's just not adequate for her needs and she needs it twice a day. Levemir also doesn't seem to work very well for some people.. I am one of them. I tried Levemir last summer after having been on Lantus for years, and even at triple the dosage I had been taking of Lantus, I was completely unable to achieve any kind of control with Levemir at all.. I felt like I was constantly chasing highs no matter what I did. So I switched back to Lantus at my old dosage. Things were back to normal the very next day. So that kind of thing falls under the "if it's not working, change it". But it might be too soon to make that call in your case.. sometimes timing or dosage changes can be all that is needed.

    That might be overreacting unless she had large ketones too, and I don't honestly know what the ER would be able to do for you that you can't do at home - not to mention it would likely be VERY traumatic for your daughter.

    The hair falling out can be a result of malnutrition, which may not be unexpected depending on what was leading up to her diagnosis. When the body is not able to use glucose for energy a lot of other things start to happen. If she lost a lot of weight beforehand that could be all it is, and you're only noticing it now as the weak portions of the hair shaft are exposed and not still in the hair follicles. It could be a thyroid thing, and it could also be a number of other things, many of which are benign. I wouldn't worry too much just yet about all the "what ifs"

    My only advice - it's NOT your fault when her numbers are not great, and it's not her fault either. It is just part of this disease. You learn to manage them, and that's the best you can hope for. I have weeks upon weeks where my numbers will be textbook perfect, and then I'll get thrown a curveball where it feels like nothing I do works and I will be over 350 for not just hours of a day, but perhaps several days in a row... it sucks, but I try to deal with it and move on.
     
  14. twicker1

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    I am so glad you found our little community! I hate to hear about your daughter, but this forum is a Godsend for me and many others. Not everyone has the same insulin regimen, but you will definitely get a variety of ideas and advice. Please post often, and don't feel like any question is not worth asking. It's the only way to learn. We've all been there.

    Some additional questions... How often is she eating? Do they have you on a set eating schedule? This is not needed, but I was wondering how her numbers are, say, 2-3 hours after eating? Also, how are her numbers when she wakes up? What times ARE you seeing her blood sugar in range? Any particular time of the day?

    I understand that ya'll are new to this, and yes, it is very important to have a team that you can count on to help you when you need it. I am NOT telling you to start giving insulin willy nilly if you are not comfortable doing it, but it sounds like that is what is needed. More insulin.

    Do you have a CDE that you can talk to? I know that for the most part, I only speak to our endo at one appointment a year. Other appointments are with the NP, and all calls to the clinic during business hours are handled by the CDEs.

    Where do you live? There may be someone on here that can point you in the direction of a good doctor.
     
  15. KHM

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    We're in Maryland; there are Joslin "clinics" in the area and a very highly regarded group of pediatric endo's at National Childrens' Hospital. We're scheduled there for the end of April and just in case, we're waitlisted at a Joslin site.

    Reviewing the patterns of her blood sugars is actually the easy part: my husband and I are both epidemiologists so trend analyses in disease is what we do well....her highs are completely random---sometimes her postprandials are perfect, some times they're near 400. There's no time of day pattern---for a while we were thought we were seeing a pattern of mid-afternoon - evening highs dropping off at bedtime and staying OK till right before lunch when they'd go high...

    Things do point toward an insufficiency of insulin. What going to an ER with a high BG and symptoms would do for us is bring us the scrutiny of a different endocrinologist who I would hope would at least attempt to adjust the insulin... I would certainly not accept a simple "lower the blood sugar for now and release" effort. :)
     
  16. Sarah Maddie's Mom

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    Is your endo a pediatric endo? Because I haven't come across one quite so ... inflexible, unless they were accustomed to treating adults.

    My advice is to get a new endo, NOW - forget about waiting 3 months - you don't need her running in the 300's for 3 months, nor can, or should you be going to the ER with run of the mill highs. They won't do any better than your regular ped at dosing insulin. But if you aren't comfortable making changes to her dose and correcting without Dr's orders, and you have a Dr who isn't helping then I'm not sure what option you really have :confused:

    Big picture, D is very difficult to control in a growing child. We all get smarter and more clever about what works for our individual kids but it takes time. I've been doing this 8 years and I still have days that just don't follow any of the "rules" - luckily they come less often, but the point is they still come. D is a very cranky taskmaster and if your endo led you to believe that things would get "regulated" if you just do A, B and C ... then he/she gave you very bad advice.:(

    But a belated welcome, and here's hoping you can find a better Dr!;)
     
  17. frizzyrazzy

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    simply put, that's unacceptable. I would suggest you call the new endo and explain what's happening. Tell them that you have very detailed logs and if you could fax them to the CDE that you'll be seeing. Once someone takes a look they may be able to get her in to a sooner visit.

    Once you're more into this you're going to be expected to make dosing changes as needed. We don't need or get orders each time a change needs to be made - however - I can see your hesitation.

    But I'm wondering - how much total insulin has she been taking each day? the total daily dose (add up her meal / snack / correction shots and her 9 u of Lev) She's only 44lbs - I'm wondering actually if she's taking too much.
     
  18. wilf

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    You were right to post here asking for help. Your endo is either incompetent or neglectful or both - either way you need a new one as soon as that can be arranged.

    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:
     
  19. KHM

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    Yes, she certainly runs a pediatric endo practice but thinking now, I don't recall confirming her board certification and I should do that---except it doesn't matter. I'm finished with her.

    I'm in a bit of a quandry (and you're seeing it in these posts) because I know very much about the endo we're going to see in late April; she has provided care for my next door neighbor's Type 1 son for 10 years---I've watched it all unfold there. Our pediatrician has faxed our data to that practice and we're at the top of their wait/cancel list but we still have a wait ahead of us.

    I think the direction I'm heading here is to begin making corrections between meals when required. Since I don't know what a reasonable endocrinologist would do, and acknowledging that few of us here are, would anyone be willing to comment on the guidance they've had regarding between meal corrections---I'm fine to begin with a mid-day correction dose consistent with our mealtime corrections but at what level have some people made such corrections? Anything over target? 100mg/dl over target?

    Waiving all liability here; I'll make my own decisions and I'm OK with accepting responsibility for how I treat my daughter... :eek:


    Not trying to dodge the forum member who has asked about weight and total insulin dose--- it depends on the day, because of the correction factor. On average,though, I'd say she gets 15 - 18 units of Novolog---I think this is rather high for her age and size (nearly 7, 44 pounds). I think I mentioned before the 9 units of Levemir daily. Since this concern about potential excess of insulin has been raised, where would that lead a clinician in managing the blood sugars? I've wondered about co-morbidities which could contribute to unexpected response to insulin/glucose.
     
    Last edited: Mar 24, 2010
  20. wilf

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    Just have to get DD to bed at this end, will be back on in an hour or so with suggestions re changes to insulin regimen..

    Note that I'm not sure that more corrections (in particular between meals) are what I'd be advising. Will wait for your answers and check back in shortly.. Cheers! :)
     

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