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What are the things I need to experiment/observe to find out? And does anyone have a "plan" for tho

Discussion in 'Parents of Children with Type 1' started by rutgers1, Mar 11, 2011.

  1. rutgers1

    rutgers1 Approved members

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    I have a number a great people in my life who are helping us as we stumble along the learning curve of diabetes with our 4th grade son. He spent a good chunk of his first year honeymooning (to the point of not needing insulin at one point). That has ended in a big way, and we are trying to learn as much as possible. For the first year, we pretty much just did what the sheet (see link) our doctor gave us told us (calling in to him for adjustments to the sheet from time to time).

    I have gone to the friends for advice and it seems that the message is to:
    1) read up --- don't just listen to the doctor
    2) figure out how your child responds to different foods and other variables
    3) adjust accordingly

    I get the impression that #2 and #3 above are generally meant to be observational -- staying observant, looking for trends, and combining that with what you learn in #1. I get that. But at the same time, I'd like to do a few more "controlled" experiments.

    I figure a lot of you have tried little controlled (as much as you can "control" variables) experiments over the years, such as:
    ---- giving different foods and tracking blood glucose
    ---- exercising in different amounts and tracking blood glucose
    ---- testing more often to see what happens during sleep and other times of the day that you weren't sure about

    I assume the easy thing to tell me is: "Go out, give him some food he likes and see what happens!" Yet I am wondering if any of you have tried this type of thing in a more systematic way. I thought that, perhaps, there is an optimal time to do this, optimal starting blood glucose number, optimal time to track (and time periods between checks), etc. As much as someone can offer a "plan" for an experiment given the crazy nature of diabetes, I am looking for one.

    I am also looking for someone to lay down a few tips for what they feel every parent should know. My neophyte knowledge of this suggests that I would want to find out:
    1) How much does 1 gram of carb affect my son?
    2) How do different foods affect him differently? -- which ones hit immediately, and which ones hit later?
    3) How long does his insulin last?
    4) How does he respond differently to insulin and food at different times of the day?
    5) How does rest affect him? Exercise? Stress? Sickness?

    I can't stress enough that I totally realize that things vary from day to day, week to week, and month to month. I also realize that there is never just one factor/variable affecting his blood glucose reading (might be sick, stressed, and just ate a fatty meal, etc. etc. etc.). But I think I'd feel a bit empowered if I had a little "cheat sheet" of tests that I could run him through every so often to see how different things are affecting him.

    Has anyone done something like this? I'd love to hear how you do it, at what intervals, and any other tips you might have.
     
  2. Sarah Maddie's Mom

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    There are formulas (in the books) that can help you calculate your son's insulin sensitivity ( in the books) and guidance for doing basal testing can be found (in the books) and understanding insulin duration can be learned (in the books) :cool:

    Imho, I would read first and then run "tests" later. I think you will get better information, more valuable information if you spend a week reading and learning the basics before turning ds into a science experiment.

    You are absolutely on the right track, but to be honest, I think you're putting the cart before the horse.
     
    Last edited: Mar 11, 2011
  3. virgo39

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    I agree with the PP. I look at our numbers in light of the formulae in Pumping Insulin/Think Like a Pancreas to try to see where we are lining up. Not that any formula is one size fits all, but that it can give you an idea of where you are or are not syncing up with more typical numbers.

    The answer to almost all your questions is test, test, test. But to be honest, there are many times when I simply tweak something to see how it works. We don't do a lot of basal testing other than overnight testing (which has in any case been the most problematic time for us).

    You are asking all the right questions!
     
  4. kimmcannally

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    If you can get a CGM, it will make things much easier - not so much testing to see how his BG is changing. I agree with PP you need to read Pumping Insulin/Think Like a Pancreas. They have formulas and charts in them to help you.
    I like to use the bot at the type1 chat to help me figure stuff out too :D
    http://type1chat.org/

    You can ask Scott for the commands - he is a wonderfully helpful guy. As always, YDMV and these are just guidelines.
     
  5. Gwyn

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    I have done this sort of thing--especially when DD was younger and I had more control over her activities and eating habits and when we still had the CGMS. Sometimes you learn a lot, sometimes it is a big waste of time :).

    If you want to try it, my advice would be to start with just one area that you think would help the most and try to control the major variables (for us: type of carbs, fat, and exercise) . I did the most successful "experiments" with breakfast. Generally speaking, I would make the same breakfast every day for a week or so and tweak ratios up or down until the numbers were coming out where I needed them.

    After that initial period I began to swap different things in and out as she desired-banana for strawberries, two pieces of toast instead of one, 10 minutes of shooting hoops in the driveway while waiting for the oatmeal to cook etc. and kept good records. This is how we found out that two pieces of toast never works for her (even if you add in the hoops!), but she can eat as many eggs as she likes without trouble.

    Another thing I've done is for eating out. Keep a log for restaurant food and try to jot down the meal, the dose and the outcome. It's not easy to log so much, but you can keep it on your phone or a notebook in the glove box--or even just circle it on the kids menu and stuff it in your purse. Next time you are waiting for something, clean out your purse and take a quick peek at them.

    I don't stress about writing every single thing down, but even DD will sometimes say things like, "Remember the last time I ate this? Burgers AND fries means staying up all night so I'd better have the rice instead" (which still doesn't really work out quite right, but usually means only 1 correction later to catch the fat instead of 3 or 4).

    Hope that helps.
     
  6. mmgirls

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    Ok start slow and get the real basics down first while reading and formulating questions that will help you first.

    If you are not already using a nutritional food scale to measure out foods I would get one asap. Accurate carb counting is essitial to everything else.

    I would get a good food log to keep track of food insulin and other variables.

    IF you are interested in CGM and PUMPING call your endo for information, a fourth grades can use these items and feel more incontrol.

    I would suggest the books Using insulin or Pumping insulin to learn how to spot trends and make educated adjustments.

    Good luck.
     
  7. wilf

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    Which reference texts have you read? If you haven't read any yet I'd start there.
     
  8. swimmom

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    You sound very dedicated to taking the best care possible of your son. I would just caution that you be sure your son is on board with participating in "tests" that are outside the norm for his usual activities. Also research re: gylcemic index and learn about carb factoring.

    Not to be a downer, but in my experience so far there isn't a final answer. Just when we think we have everything figured out, my dd hits a growth spurt and the numbers go crazy again. Maybe there's less variation for adult type 1s.
     
  9. rutgers1

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    Thank you for the replies.

    I like the idea of starting with breakfast.

    It's funny how narrow my viewpoint has been the past year as I have clung to the sheets provided by the doctor. I think he has done a very nice job adjusting the sheet as needed, but at the same time, I never quite took the time to understand exactly what each part of the sheet meant. I had a general idea, but I never quite did the math, so to speak.

    Someone asked what books I read. They made me read the Pink Panther (cover) book while in the hospital upon diagnosis. I also read The Idiot's Guide to Diabetes, and my wife read some diabetes cookbook type books. We've both read some stuff on the web, but as I said, I kind of just trusted the process with the doctor. Now I am at the point mentally - and because of need since he isn't honeymooning anymore - where I am able to branch out and learn more. I am about 1/3 of the way through Think Like a Pancreas.

    I definitely don't want him to feel like a guinea pig. But I also don't want to go much further without knowing how certain foods affect him, or how exercise, stress, sickness, etc. play a role.

    Once I get through Think Like a Pancreas, I still think that I am going to set up some controlled situations - such as was done by the previous poster who gave her daughter the same breakfast for several days. We have done that, but I have never taken the time to truly write EVERYTHING down and analyze them thoroughly.
     
  10. Lee

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    I think simple observation is best. Unfortunately, and especially in a 4th grader, growth spurts are going to mess you up, and puberty is lurking around the corner.

    Every time you think you have it figured out, your son will grow and mess everything up. And then he will not grow for a while, and that messes everything up...kids growing up is just a viscous cycle with Type 1.

    Should you know how much 1 carb will raise his BS - yes. To do this, give him a 5 carb snack when there is no active insulin. Test in 30 minutes, 1 hr, and two hrs. That way you know that 5 carbs raises him 30 points, so 1 carb will raise him 6 points. He is 72, so let me give him 2 carbs to get him up to mid-eighties.

    However, this will only be good for about 3 or 4 weeks, days, hours :rolleyes:.

    Should you know how fat affects your son. Absolutely. We had no problems with fat for 5 years. And now bam - it is hitting my DD hard. How do I know? We ate pizza and 5 hours later she was sky high! So I made a mental note. Second time she ate pizza - wouldn't you know, the same darn thing happened - 6 hours later she was sky high. So the third time, we decided to do a square wave and wouldn't you know, she came out perfect! But then another couple weeks passed and she had pizza again...and well, she bottomed out with the same exact square wave.

    But even though things fluctuate in our growing kids all the time, we still need to be observant and have a basic understanding of what makes our child's diabetes unique.
     
  11. rutgers1

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    Lee....If I test when there is no acting insulin, wouldn't that mess things up for when there IS acting insulin? For example, if I were to find that 1 gram raises him 6, what happens when he goes low an hour after taking his insulin? I won't quite know how many carbs to give him since he had insulin relatively recently. I figure the answer is staring me right in the face, but I figure I'll ask anyway so you guys can laugh at the new guy, lol.
     
  12. mmgirls

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    Bolus size will always be changing, 1 hour after a 3 unit bolus will be ver different from 1hr after a 10 unit bolus.

    There is a defference between bring up a mild low after the peak of insulin action and bringing up a low AT the peak of insulinf action which goes more towards knowing about insulin action and duration in your child. Many here call this IOB, insulin on board and that coupled with FOB, food on board.

    So, if it was a high fat/protein meal then may be the insulin took too strong of an effect because digestion is slowed due to the higher fat/protein.

    Knowing how much 1gram carbs brings up your child is just a way to carefully bring up lows without giving too many carbs that they end up too high and this up and down cycle to continue.

    I have to go but will be backk when I can.
     
  13. quiltinmom

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    This is the reason why I have NOT done any "scientific" studies. Because "home lab results" don't necessarily translate to real life. It's so much work, so much studying of numbers, this and that, etc. Not knowing the unknowns makes it so complicated that it's not really worth it for me. So basically, life is your laboratory. You don't necessarily need to go out of your way to create experiments, although it wouldn't hurt. Sometimes they help, but sometimes they add to the confusion, so be wary of that.

    I, too, went hunting for more information around the time DS came out of honeymoon. (At that time I also read Think Like a Pancreas and found it very helpful.) That's also when I found these forums. Before that I was much like you--test, eat, dose, correct if necessary--and normally the only problems were from a rare illness or forgotten insulin dose. There's nothing wrong with "clinging" to the doctor's sheets as long as it is working for you. :) Now you have mastered the basics and you're ready for more. The forums have been a great source for solutions to day-to-day problems for me.

    I suggest logging for a while, if you aren't already. If you have a particular weird number, you can jot down a little note about something that might have affected that number--what he ate, or certain activities or stress. As you go back and look, you might begin to notice patterns. I'm so glad I was logging back in August, or I might have never figured out it was the cold cereal causing his sunday lunchtime highs. Then, I tire of logging and his numbers have been decent, so I stop. Then we start seeing highs again, so I start logging again until I can figure out what needs to be changed.

    Think Like A Pancreas explains how to treat a low with insulin still in his system. You just haven't gotten to that part yet.

    As you get more time post-honeymoon behind you, you'll begin to feel more empowered. It will come naturally over time. It's a little bit like caring for a newborn baby. At first you just try different things, hoping something will work. Once you figure it out, you remember it and try it again next time. It won't work EVERY time, but you naturally start to be able to predict what will happen without necessarily being "studious" about it.


    Please don't misunderstand...I don't mean to suggest that creating experiments to see your child's reactions to things is a bad idea or that your dedication to figuring it out is for naught. I think you're on a good path. We all could use a healthy dose of your enthusiasm. :)

    Good luck! We're here for you.
     
  14. wilf

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    You need to be tracking 3 things:
    - insulin on board (from boluses and corrections)
    - carbs on board (plus fat on board if there's lots)
    - effects of exercise

    You also need to know 3 things:
    - carb ratio;
    - correction factor
    - how much 1 g of carbs raises BG

    *****

    So to make it real I'll give you an example..

    Say for example it is 7:30 pm and we ate a low fat and high GI supper at 6 pm. DD has just measured, and is 150.

    I do my calculation (based on the sort of observations you're talking about) and realize that of the 6 unit bolus DD had at supper there's still 2 units on board.

    Considering the high GI low fat supper we had, I also know that there's almost no carbs/fat on board. Her carb ratio is 1 unit insulin to 15 g carbs.

    I've done the testing to see how much a gram of carbs brings her up, and so I know that 1 g brings her up 4 points.

    I also know what her correction factor is: 1:50, that is 1 unit of insulin drops her 50 points.

    So here's some questions for you to try to figure out:

    1) Is she ok for the night (at 150), or will she need more carbs? If so, how many?

    2) She's decided she wants to have a big snack of 50 grams of chips and dip. Does she need a bolus and if so how much?

    3) What other information do you need to provide the best possible answers to the above questions?
     
  15. Jacob'sDad

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    Figure out what things will screw up BG bad enough that you can't see normal patterns or make normal adjustments.

    For example: A massive breakfast spike can screw up BG for a good portion of the day. If you can get rid of that spike you might find that less insulin is needed all day long. If there is a spike some days and not others due to what is being eaten at breakfast, then you might see quite different patterns and not just right after breakfast.

    Fat is another culprit. Jacob's BG can be impacted all night long from a fatty dinner. I don't want to look at those highs and think that I need to change the pump settings. His permanent basal settings are still OK, it's those fatty dinners that are screwing things up.

    It's kind of like if my cars engine was making noises so I decide I'd better tear the engine down and fix it. NO. Start by checking the oil! Don't fix what isn't broken!
     

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