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Maybe a dumb question at a year in, but...

Discussion in 'Parents of Children with Type 1' started by MommaKat, Feb 14, 2012.

  1. MommaKat

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    how do you assess the accuracy of basal, I:C and correction factor on MDI? It's never been explained by anyone at the endo center, and we have asked.

    Between the Valentine's thread, comments on our struggle with over night lows that led to smart changes (thank you to both wilf and Emma on that), it really has me wondering how the endo sets everything originally, and why ours at least, doesn't seem to consider changing them without a ton of push back between visits. Am I missing something? I've gotten help from some on-call CDEs with changing rates temporarily when dd is sick, but when we return for the next visit, her endo expects us to have resumed exactly where we changed from. Intuitively that doesn't make sense to me.

    For those on MDI, how do you go about making adjustments to any of these? Just try, check, wait and see like we've done?

    Between suggestions here and some changes made when she was sick, her basal dose came way down and we increased (grrr which is the right word here?) her I:C and correction. Lantus she's at 12u, 7 in the am and 4 at night. Very few over night lows lately thank goodness. I:C we're 1:15 breakfast, and 1:18 lunch and dinner. Corrections we give 1:40 over 125. This is so different from I:Cs around 1:30-35. 16 to 20u of lantus, and not correcting until she was at 200 or above. (Still the expectation, but we're not going back to that.)

    What bothers me is that suggestions from the center don't seem to be based on any logic. I got some great advice here re the overnight lows, then she became ill and we saw our first string of 400s. I spoke with an RN, and she adjusted I:C to 1:9, correction 1u for every 40 over 100, said it was very aggressive, be cautious, and good luck. (Clearly, we've adjusted since.) It felt like the first time someone at the center really listened to what was going on.

    As for the snack issue - I read a suggestion today that sounds great and doable. Still, I wonder how many people are instructed similarly in not letting our D kids eat carbs and cover with insulin more often than every three hours apart. (Even dd's dad heard that particular instruction - multiple times.) It's probably dd's biggest reason for wanting to pump. She hates not being allowed to eat more often than every three hours, and that didn't come just from the endo - the dietician repeats it whenever I have questions for her.

    Sorry, it's a lot, but I feel like I slept through the first half of class, and all these questions remain unanswered in my head. I don't think we're doing terribly, but I sure don't feel as self assured as many here seem to in their posts. The differences in endo approach and instruction are confusing, and I sometimes wonder if it's a matter of changing endos, or if it's us that missed some crucial step in the learning process.
     
  2. Hayden2007

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    Bump!


    Sorry I have no suggestions for you. We are MDI and only have gotten ratios from endo office. We have never adjusted on our own.. H has only been DX for about 1 1/2 months now.

    Mommy to 2 boys

    Hayden 1/7/07- DX 1/5/2012
    Tanner 9/22/10 non-d
     
  3. Amy C.

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    While on shots, my son ate what he wanted and would receive a shot for it after he finished.

    It has been said over and over that giving a shot for the food eaten is fine. It is correcting multiple times within three hours that is a problem.

    There is no difference between bolusing for the food eaten and giving and injection of the same amount of insulin.
     
  4. hawkeyegirl

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    Well, with respect to basal on MDI, we tried to keep ours set so that he woke up within 40 points of where he was around my bedtime (so when all the supper bolus was gone). Ratios during the day were set so that he was back within range 3-4 hours after a meal. ISF was set so that corrections brought him back down into range within 3-4 hours.

    That's all ideally, of course. D rarely plays so nice.

    I think for me, a lightbulb went on when I realized that there's no way, NO WAY that the best endo on the planet could do a better job making adjustments than I could. Sure, sometimes they had helpful suggestions, but even reviewing the most detailed logs in the world, they didn't have access to the real-time information that I had. Once I came to that realization, I started striking out on my own.

    I think the best advice to keep in mind is KISS (Keep It Simple, Stupid). Start with the basics. Insulin lowers BG. Food raises BG. Glucose from the liver raises BG. There is no magic to adjusting meal insulin or basal. You know what is likely to happen if you raise or lower the dose. The question is whether the adjustment will be enough or too much. And the only way to know that for sure is to test, test, test.

    Most endos teach to the middle, the average, the relatively ill-informed parent. Because that's where most parents are. By and large, the parents on this board can do way better than that. But the endo can't really teach you to do better. It's trial and error and seeing what works with your own little sample set of one.

    You're not even a year into diagnosis yet, so you shouldn't feel intimidated that others may sound more "self-assured." We have been at this over 4 years, and I still run into situations where I just have to give it my best guess or have things happen for no apparent rhyme or reason. But if you slowly begin to make your own adjustments and figure things out for yourself, you'll be better equipped to deal with those times than if you remain bound to your endo's recommendations. One thing that I would NOT tolerate is being scolded by my CDE or endo for making changes or going against recommendations. They are your advisor, you are THEIR boss, and in the end, you make the call, not them.

    Baby steps. Keep it simple. Try something and see what happens. It's how everyone on here who makes their own adjustments has learned to do so, I guarantee it. :)
     
  5. Lakeman

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    The endo has formulas for determining the various ratios, etc. But real world adjustments are better.

    As was said, adjust the basal so that the wake up number is similar to the bedtime number. Some words of caution: if you correct or treat lows in the night then you do not have data for that night, and if you have dawn Phenomenon then the morning number also does not reflect good data.

    Evaluate the I:C weekly and adjust slightly each week based on if she is running high or low for a certain period of time. But if you eat a meal late or early then you don't have good data.

    How many points a correction will mover her can also be determined through observation. that may not be the same for every time period of the day.

    We were told that we could eat snacks and between meal food if we waited two hours after the earlier dose. It is always better to stick to your normal schedule so that the body has time to have both post prandial highs and then return to normal but exceptions can be made - this is true on MDI and the pump. Maybe you were told three hours based on honeymoon?

    I think they teach us as if we are novices (which we are at first) and then only accept that we know what we are doing when we have the confidence to know that we know what to do. At some point you will learn that you know your daughter better than any CDE that does not live and breath her situation.
     
  6. bnmom

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    If your endo/CDE/nutritionist say pumping will change their "3 hour" rule then I'd ask them to explain how and why. That doesn't make sense, because the pump is just a different way to deliver insulin, it's the same stuff (humalog, novalog or apidra) it's just coming through a canula rather than a syringe. Your daughter won't need another shot, but she'll need another bolus.

    I totally agree with hawkeye about endo's teaching to the middle...ours is through a large local children's hospital so they aim for teaching to the bottom of the barrel on most things. I don't blame them for it, they have to keep things basic to cover parents that don't understand. That became so clear to me during our pump class when one father there said "can't wait for him to get this pump thing, I'm sick of counting carbs!" :eek:

    That may be why you're hearing the 3 hour rule, it could be that so many of their "middle" parents give random numbers that can't easily be analyzed because there's always IOB overlapping...that they just prefer to tell everyone to get numbers they know are clean and therefore make it easier to figure needed adjustments.

    On MDI I did basal adjustments based on wake up number. Each I:C ratio I based on the reading taken right before the next meal (if there was no IOB). All changes were made based on trends (2 days of lows or 3 days of highs.) Corrections I've never tweaked, so no input there...Bobby's isf is the same now as it has been since day 1.

    So take what your team says with a grain of salt, and remember that they aren't living with your child. They're giving very basic guidelines, but you are the one best suited to decide what will work best for your baby. I've driven myself crazy at times trying to figure formulas and set rules for everything, but it always comes back to trial and error. :cwds:
     
  7. MomofSweetOne

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    Have you read Think Like A Pancreas? It explains all of it. I felt so vulnerable at not being able to care for my child post-diagnosis. I knew the CDEs were seeing things in her numbers that I wasn't, and when I found that book, the lightbulb went on. I think it should be given to every new family at diagnosis.

    Pumping requires readjusting everything all over again. On MDI, my daughter's rations were 1:13 and 1:15, but on pumping, they are 1:15, 1:17, and 1:15. Initially she was on 1:25, but her TDD has really gone up in the last month or so. Her correction factor on MDI was 1:50; now it's 1:70. But, there's nothing like the feeling of satisfaction of seeing a straight line on the CGM after a tweak of correction at bedtime that exactly brings her to target. It doesn't happen every day, but the times it does...Happy Dance!:)

    Don't hesitate to ask for help if you want it. The help here is great!
     
  8. MommaKat

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    Lots of interesting and helpful thoughts here, and I'm a bit brain dead tonight so my responses could be less than coherent. A few things I really latched onto -

    DD's long string of overnight lows and what I thought was us over treating those lows looks more like she does experience a dawn phenomenon. Even with the major reduction in lantus, she still drops 40 to 50 a night, but at least it's not 100 to 200 with me needing to send her to bed at 250.

    The other big problem that we were having was she wouldn't hit a normal range post meal until 4.5 to 5 hours later, and then was so low it created problems with trying to bolus sufficiently for meals. Between some of the comments I received in the parents of teens section and reading Think Like a Pancreas, I got to a point where I felt like her basal and bolus were upside down - too much basal, too little bolus with lots of night time and between meal lows, but really high post prandial readings. Honestly, I got to a point where I couldn't sleep more than 2 hours or the low would be too low, and the center wasn't helping with adjustments, or having me increase lantus to combat high post prandials but not addressing night time lows. It doesn't help that dd has continued to lose weight since diagnosis, and struggles to stay at 98lbs which tells me she's not eating enough or meeting her energy needs, and that would explain why she's been ill so often.

    I love the advice and info here, but when I'd bring it up with her endo, there was such stark opposition to it that I felt truly conflicted. I can tell just how much by the fact that I was more comfortable making adjustments last spring and summer than I have been lately. I can see, from reading Lakemen's response, that it's understandable that I couldn't get a good read on her needs. It's actually reassuring to see that backing off lantus has helped a ton, as has changing her I:C ratios. Maybe it won't be so difficult to cover snacks with a percentage of that, in which case she'll be much happier too.

    I did get Scheiner's book for Christmas, and read the first four or five chapters - but honestly between struggling with lack of sleep and trying (still) to find a job, it took a back burner. Sometimes, it's just hard to prioritize.

    We're certainly not there yet, (semi joke, we're never really there with D), but closer with smaller drops at night and avoiding the extreme downward and upward swings that had become the norm. The whole dawn phenomenon is surprising in how much it raises her. How do you navigate that? Just make sure you get a fasting bg early enough like I've been trying?

    Trying not to be too wordy (and failing as usual) but I really appreciate the comments and suggestions. I finally bit the bullet and requested a change in endo today. If they can't accommodate, I'll look into the few other endos around (have searched and don't see ped endos, but I think some CO moms here might be able to steer me in the right direction.) If possible, dd doesn't want to leave the center, but we are completely done with the endo.
     
  9. TheFormerLantusFiend

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    I change my carb ratios frequently, and have from the beginning; ditto for the Lantus dose.
    For some reason I really didn't need to change the correction factor for a couple of years; now I change it every time I change the carb ratio.

    To assess carb ratios, what I used to do was just record the carbs, record the insulin, see if blood sugar was up or down three to four hours later from the starting point, and adjust insulin dose up or down.

    Currently, I use a formula I made myself. I assume that a carb raises my blood sugar by 5 mg/dl, which is not entirely accurate, but close enough.
    I take a blood sugar reading when I take a short acting insulin dose and haven't taken any insulin or eaten in the previous four hours. I record food eaten over the following four hours, check blood sugar again.
    For instance, this morning my blood sugar was 96 mg/dl. I took 9 units of Regular and ate 65 grams of carbohydate. My blood sugar four hours later was 108 mg/dl.
    What I do with that information is I multiply the carbs by five to estimate how much they'd have raised my blood sugar without the insulin, then add how much it fell, in this case negative twelve. That's the insulin's influence. So I get 65*5 - 12 = 313. I assume the 9 units stopped a rise of 313 mg/dl. Divide by 9 and that rounds to 35, so my ISF this morning was 35. Divide by 5, since that's what a carb raises my blood sugar, and my carb ratio should've been 1:7.
    I do that kind of retroactive calculation and the numbers I get vary but they sort of trend so I can make better predictions about the future.

    I only really find this helpful with my breakfast and supper. At lunch time, my insulin sensitivity increases enough that I need to eat roughly 30 grams of carbohydrate without any insulin and I don't inject for lunch unless I'm high or eating more than about 30 grams of carbohydrate, because of my Lantus.

    As for basal, I generally only look at what happens overnight for adjusting basals, because I'm on Lantus. Without a CGM, I generally only paid attention to blood sugar change overnight. So if I went to bed 95 and woke up 195, I'd assume I needed more Lantus. When I got my first CGM (the Guardian), I found out that was a mistake. There were a lot of nights that I slept through hypos and highs. I could go to bed 125 and wake up 125 and have a graph that showed that I had gone high and then low and then come up during the night.
    For unclear reasons, my nights are more stable now, and I more often do see just one or two trend lines overnight, which makes things easier. But generally I adjust the Lantus dose if three out of four nights in a row present a real rise or fall or have hypos in them even if the overall trend is upwards, or if two days in a row have both nighttime and daytime issues that indicate my Lantus dose is off. I don't change the Lantus anymore based on one day patterns because it's too likely that the problem was that the dose didn't absorb well. I also change the Lantus dose based on long term patterns, for instance I've raised doses for weekends, and lowered doses because of travel or illness or times when I need to run higher because of religious fast days or medical procedures when I'm required to be NPO.
     
  10. Mrs. Russman

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    When our son was diagnosed our Endo told us. "I will be the over-all expert about diabetes, but you will be the expert on your son's diabetes."

    You are the expert on your daughter's!
     
  11. lgouldin

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    This is what I do also. Since everyone is so different it all seems to be try it, if it works do it, if it doesn't try something different. What works for 1 person doesn't for another. I make small adjustments and wait to see. I adjust 1 insulin at a time and wait and see.

    Some days my dd waits 4 hours between meals and some days she doesn't. I just cover the carbs when she wants a snack.

    A thread call Things you wish your Endo had told you at diagnoses or something like that is a very good thread to read:D
     
  12. Amy C.

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    I would say you ought to start in small steps as well. Have your daughter eat a snack and note what her sugar goes up to -- if at all. If the sugar goes up, next time, give insulin with the snack and see what happens. If you wish, give her less than you might at a meal. Test to see what happens.

    After a while, you will know if to give insulin and then how much for snacks.

    I know you are distressed that your daughter was denied a pump. It is possible to eat a reasonable amount of food at various times using injections. My son did this for years. (or I did it for my son)
     
  13. BittysMom

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    At diagnosis we were told to "always cover carbs". However they built in 2 uncovered 15 gram snacks into C's day. Then they mentioned covering dessert separately from dinner was fine, but should be rare such as at a birthday party. I remember finding it tough to follow their "rules" early on (and thought poor #'s meant I must have not have followed their instructions well) Looking back I see all the loop holes, exceptions and and different advice I received depending on who the on call doc was :confused:!

    I cover some of C's snacking. It usually works fine, but I have sent her to 40 doing it as well. If I had thought about the fact that dinner (her lowest time of day) was coming up, and her I/C was in the midst of changing from 1:80 for lunch to 1:44 for dinner, then I would have done things differently.

    C had a record of 9 shots on Monday. Her 4 normal plus: 1 for a breakfast party at school, 1 for an after school snack while she was high, an extra at dinner time for birthday cake and 2 corrections during the night because for some reason I am a serial cake carb under-estimator! :eek: (seriously, I'll stare at the cake and say "Now Linda, you KNOW you under estimate this all the time, don't do it again!" and then I'll round down on the insulin or something).

    I hope the new Endo is an improvement for you.
     
  14. MommaKat

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    Reading over the responses, I feel like I might have mis-stated something. We have been adjusting how much insulin to give for a long time. It's the struggle with feeling like her ratios and basal were not correctly set, along with the edict not to cover snacks unless it had been three hours since she last received fast acting, that prompted my questions and post.

    We've long been away from the ability to eat an uncovered snack (not since summer I'd guess), and the three hour business is really eating at dd. (pun inteded.) We have been covering two snacks a day lately - which puts her at 7-8 shots a day, so yeah, we're upset about the pump denial. (3 meals, 2 snacks, 2 basal shots, and some night corrections.) Thanks to Hawk's suggestion we have a plan to cover snacks closer than that three hour mark slightly more conservatively. I think I mentioned in a different thread that the two times we tried this she went low (42 and 36). Maybe it was a combination of honeymoon, basal, and I:C ratios being off.

    My question about where or how endos get their 'starting point' for a kid comes because her endo is adamant that she needs 16 to 18 u of lantus, and I:C ratios between 25 and 35 carbs per unit. For us, between overnight lows and high post meal checks, nothing made sense. So, we've changed a lot these last few weeks, and it is getting better. But, I also have an appointment at the center Friday where we're going to share just how different her I:Cs and lantus dosing is from what's on record. I have logs to back up the changes, and the one RN who helped - but I'd like to go in with a firmer grasp on some of the things I'm questioning them on - like the whole covering a snack thing. I feel like I've gotten a ton here on that, so thank you - truly.

    As for tracking how she responds to numbers of carbs eaten, type, amount of insulin etc. We do track all of that, and there just seems to be no rhyme or reason. Monday she stayed between 80 and 110 all day long, and snacked at bedtime because we know 96 is too low to go to sleep at. Same 10g snack we normally use, but this time her bg jumped to 221 and was only down to 165 by morning. Yesterday she hung around that mark most of the day, no bedtime snack, (165 at bed even) but by 2:30 am she was 92. Gave her some milk (3g) and her morning bg was 74. That's the stuff that makes me scratch my head - how am I supposed to say x grams of carb raises her this much when the same exact meal can have two totally different results? There is no consistent pattern with any one food. Is it possible she's in that funky up and down stage where the honeymoon is ending in an on again off again way? That would explain so much. (and my desire for some semi sense of a pattern or explanation for the lack of one makes me doubt that...)
     
  15. cdninct

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    I understood what you were asking! We sometimes run around in circles fiddling with doses while we are missing bigger picture of how DS's various settings are interacting with each other.

    With DS on the pump, we do basal tests periodically. We don't serve him any carbs or give him any fast-acting insulin for a period of time (generally bedtime-1:30pm or 7:00am-4:00pm--haven't done a late-day one yet), then check him regularly to see what happens. Once we know if DS's basal dose is more-or-less correct, we can figure out whether his carb ratios and ISF are correct.

    I don't see why you couldn't do the same on MDI since you are doing basal-bolus therapy. Check to see what her Lantus is doing before fiddling with the Humalog. It really helps clarify things for us because, let's face it, none of our children is the statistically average child that the endo or CDE's charts refer to!
     
  16. obtainedmist

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    I think it's really hard to see patterns when the basal needs fluctuate a lot. I really don't know how some people manage beautifully on MDI. We were a train wreck! It wasn't until Molly got on the pump and had really different blocks of hourly basals that we started seeing any consistency. I hope you are able to get it approved soon.
     
  17. TheFormerLantusFiend

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    The companies making insulin have charts about starting doses and I think some of those formulas stick in doctors' heads a little bit too well.
     
  18. mmgirls

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    Have you considered either over bolusing to cover a snack tha will be within a couple of hours, or considered useing NHP to help with the amount of shots.? Which are two options that I would consider if I was denied the pump.

    Of course I throw that out there without the knowledge to help you, but I know that there are a more than a few people here that make this work for them while maintaining a great A1C and freeing their child from the many shots.

    In regrds to you original question.

    The disparity in care is mind boggling.
     
  19. wilf

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    If it's a good endo, they will be working from a combination of the mathematical formulae which are there in any reference text (like "Using Insulin", or "Think Like a Pancreas", or "Type 1 Diabetes") and their experience with their patients. The worst endos are the ones who stick with some dumb idea they learned 30 years ago, regardless of whether it is still valid or makes any sense.

    Why not start using Regular insulin to cover snacks? We do that here, and it works like a charm. For example, at supper we give a bolus of Apidra to cover supper mixed with a bolus of Regular to cover 30 g of snacking between supper and bedtime (all in one syringe). DD knows that she's committed to having a snack (or a juice) in the period between supper and bedtime, but it's never a problem getting her to eat.. :)

    Whenever there's no rhyme or reason, I'll do some targeted more frequent measuring to figure things out. I'll measure hourly for a good part of the overnight if I'm seeing wacky inconsistencies from one night to the next, just to see if there's something I'm missing (like lows/rebounds, or growth spurt related spikes)..
     
  20. MommaKat

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    Yesterday being dd's birthday we decided to do a covered snack. She's been covering lunch and dinner with 1:18, and we ate at Noodles, so I expected her to have a bit of a pasta spike. Not what we saw...

    She was 118 at dinner, gave 3u for 54g carb
    2.5 hours post she was 87,
    decided to cover Ice Cream & cone more conservatively 1:20, 2u with 6g uncovered
    3 hrs post 102, not high enough for 11:30 so had her eat 8g w/ protein
    slept through next check, but woke at 4 w/ a bad feeling...42
    treated with 15g juice and 6g smarties, waited 15m....51
    treated with another 15g juice and smarties, wait 15...56
    worried about over treating, 6g carb, wait 15.............135
    7am check before lantus and breakfast insulin............ 140

    Huh, I expected a crazy spike from that many carbs. So we planned a higher fat breakfast and covered 1:18 instead of 1:15
    3 hours post ....................................................51 - again
    treat w/ 20g fast acting, waited 15m...................65
    treat 5g more, wait 15......................................105

    6th grade eats at 10:30 am so I told her to go 1:20 and not get insulin until after she eats. I hate doing that, but am not sure it would be wise to give it to her so soon after another low. She is not feeling the majority of them. Her friend told her to test in music, and the health aide (who yelled at her for treating in class) said she's pretty pale.

    I dropped lantus last night because I caught her going low the night before. I'm guessing this is her body finally getting over the last of being sick, and just happened when we decided to cover a snack. But still - she's convinced after last night that her endo is right and she can never, ever eat more often than 3 hours apart. I want to reassure her it was something else. Would you have gone more conservatively on the dessert?
     
    Last edited: Feb 16, 2012

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