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Ok, I'm obsessed and looking for an EXPERT DIABETIC...

Discussion in 'Parents of Children with Type 1' started by show2tj, Feb 28, 2012.

  1. show2tj

    show2tj Approved members

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    I'm sorry, I've always been intense. Present me with a challenge and, well... I am obsessed with this flat line IVMH (what does that stand for?). I have been looking for websites with bolusing information, but I really can't find any. I have read Pumping Insulin and have gotten some really good insight, but never any concrete information on how to bolus for stuff. I always feel like I'm reading between the lines. It's like managing the BIG D is a BIG SECRET. I know it's complicated -- it isn't just about carbs and boluses -- basal rates, corrections, and active insulin time, exercise, mood, hormones, growth, etc. I know everyone is different, but is there any sameness? When people ask about how to bolus for pizza, for instance, and people offer suggestions, does the bolus information you get work, or not work? Or, do people try the bolus and then in general it works and then they tweak it? We all work so hard at this. I am wondering why there isn't a general guidelines bolusing book? We have the carb books and the glycemic index books. Something is definitely missing. I am wondering if we could compile a list of foods that people cover for and how they do it. Does anyone think we might see patterns or are we all sooooo different that there is no way this would work? Perhaps someone with two people in the family with diabetes can help me answer this?
     
  2. sooz

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    I think the big secret is that no matter how diligent we are over every aspect of D management, perfection i s impossible. Even if there were a million books, perfection is still impossible. The book we use to see what foods to cover for i s The Calorie King. If it has cabs, we bolus for it.
     
  3. obtainedmist

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    I have a suspicion that there is a subset within the D diagnosis (different genotypes etc.) that really do make it SOOOOOOOOOOO different from one person to the other. We are believers of the "trial and adjustment" approach to bolusing. Use your "oops" experiences to learn from and tweak the program. I recently read Ginger Vieira's Your Diabetes Science Experiment. She encourages PWD to experiment with bolusing and write down the results in order to make sense of it all. She also encourages people to test their basal doses, correction doses and I:C ratios...and gives you tools to do just that.
     
  4. selketine

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    I think there is a general sameness - high fat meals tend to spike later - which is pizza for some people - of course some people eat a thin crust low cheese pizza which you can't compare to a thick crust pizza with a pound of cheese on each slice.

    Some people are horribly bothered by pasta - that has never been a problem for my son. Neither is a banana.

    I think when I was learning and read that most people use a combo bolus for pizza - and William seemed to have the same issue - I just started out with some guess and tweaked it. Even the pizza we eat isn't always the same combo bolus.

    It is much easier to see what is working and what isn't if you have a cgms.

    I think it would be nice if there was a compilation of what foods people find problematic and an example of how they might handle it - and formulas they use to bolus extra for items that are low carb but have a lot of fat & protein (like bacon or a steak). However I bet there is so much variation that it might not be useful.

    I've also found that some foods that were problems - are not problems as he got older - and others take their place.

    Think Like a Pancreas is another good book you should check out.
     
  5. StillMamamia

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    Yep. BTDT.:eek:

    All you can do is keep on being proactive:

    - log when you can; keep notes for difficult foods (how you bolused, what you can try next time, etc)
    - don't hesitate to ask your endo for advice
    - do changes more often - sometimes we wait too long, and that doesn't help
    - prebolus, if you can

    A few books:

    Dr. Ragnar Hanas' "Type 1 Diabetes"
    John Walsh's "Using Insulin"
    Gary Scheiner's "Think Like a Pancreas"

    Gary Scheiner also has a site and you can get help at:

    http://www.integrateddiabetes.com/index.shtml

    Also, the following site is great for info, and there are some good explanations about bolus duration and insulin duration, etc:

    http://www.diabetesnet.com/

    But I do have to agree with the PP - I do believe there are subtypes to Type 1.
     
  6. Connor's Mom

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    I feel like you! I am chasing my tail trying to make it work and I just feel like somewhere there is someone that knows it better than me and I can't find that person. The information here is fabulous! I want is spelled out and I know that isn't going to happen but, I wish it would. Yes everyone is different but, I would love to be told, "if the BG looks like this and you've already done this then the only other thing to do is this.".

    We have constant basal issues and tweak them with every site change. You would think the Endo or CDE would have something better to offer than, "you're doing it right, he's just a tough case."
     
  7. emm142

    emm142 Approved members

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    I'm an expert diabetic. My CGMS graphs are always between 90 and 100* and my a1C was 5.0**.

    *For at least 1 hour per week.
    **A few years before I was diagnosed.
     
  8. Connor's Mom

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    Love it! :D
     
  9. mocha

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    emm, I love it!

    As far as the original post, YDMV isn't just a fun four letter acronym. I've found that if things aren't working that I need to log everything, check lots, and find the culprit. It's like being a detective, except the second you seem to figure out "who done it", a new adventure begins.
     
  10. Christopher

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    Obsessions (of any kind) usually end up being unhealthy, for the person as well as those around them. From this post and others in the past, it seems you are really focused on perfect management of diabetes. While there is nothing wrong with striving for good management, I think it is also important to sometimes step back and reassess your management style, making sure you are considering the whole child, socially, emotionally, etc, and not just diabetes.

    I am not judging and I acknowledge it is hard to get a clear picture of the true situation from posts on an Internet forum.

    Also, it is helpful to other members if you create a signature to let people know a little bit about your child's stats (age, when dx, type of insulin used, pump or MDI, etc).
     
  11. pianoplayer4

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    just do what you can, if your having problems like xyz and someone else had the same problem and did lmnop that might work for you, or it might be lmno<3, 17039792 sometimes there is no rhyme or reason, but you have to start from somewhere...

    diabetes is an art, not a science
     
  12. Amy C.

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    Truth be told: to manually try to take on the work of the pancreas is imperfect at best. We make lousy pancreases for our children.

    You cannot manually keep the sugar even at all times. It is not worth it to try. Just look for patterns and react appropriately.
     
  13. MamaLibby

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    Well, if this is the expert diabetic, then Ella is one too. LOVE IT :D
     
  14. wilf

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    The answer is that no book can tell you how to bolus correctly for your child. You have to learn how to that as best as you can, through trial and error based on the best possible understanding that you can get from reference texts and websites like this one.

    Your child's insulin needs are unique. You need to do your best to figure what they are, recognizing that they will always be evolving as your child grows and develops. :cwds:
     
  15. zoomom456

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    I am paraphrasing someone else, and sorry I don't remember who, but the endocrinologists help us with the science of diabetes, it is up to us to figure out the art of diabetes.

    Even the science portion with formulas for dosing are a guesstimate of where to start. All drugs have a range for a starting dose. For example, in a diabetic cat the standard starting dose is .25 units /lb. However, the normal range is .25-1 units /lb. Endos have this starting range and formula and then we have to tweak based on real life.
     
  16. Connie(BC)Type 1

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    Too funny , Love it!
     
  17. Darryl

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    Our "secret" is that when BG goes low, our daughter eats, and when it goes high, she takes insulin. If there is a repeated pattern day after day, she'll adjust her basal. What makes this work, mostly, is that she uses a CGM so she knows her BG always, which way it's headed, and how fast, so the food/insulin decisions are fairly obvious. We also use a fast acting insulin (Apidra) which provides more precise control.

    There are patterns in T1D, but we find that these patterns shift around and reverse over periods of days. Sometimes her BG will increase in the early morning hours, sometimes it will decrease. Sometimes BG drops quickly as soon as she falls asleep and that may continue for a week or so, then for a few weeks the BG rises after bedtime. Insulin carb ratios and correction ratios tend to be stable once you get them right, but basal rate needs can vary a lot from hour to hour and day to day.

    One reason D seems so confusing at first is because the practioners try to teach you about patterns, basal testing, etc., which you soon find do not work. In the long run you find that the key is to obtain frequent BG readings (using a CGM, or making frequent BG checks), determing the level of treatment based on the direction and rate of change, refining your ratios by trial and error, and most of all, recognizing that D is like driving a car on a different route every day where constant steering is required.
     
  18. obtainedmist

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    Spot on! I also like the analogy of trying to fly a plane level while constantly making adjustments to the different air currents, weather, and a million other considerations in the sky.
     
  19. emm142

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    This, exactly.

    Although as far as I can tell I do things in the same way as Darryl's family, but my a1C is at least 2 full percentage points higher. :eek:
     
  20. suzyq63

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    I don't know when your child was diagnosed, but I know that the first year was the most difficult for me. I took those out-of-range numbers personally. The thing that is most helpful for me is to keep a log. Mine is just a spiral-bound one subject notebook. I write everything down - food eaten, carb counts of each food, amount of insulin given, correction given, blood sugars, etc. It may be a bit overboard at this stage, but I find it helpful.

    The hard-to-accept fact is that we do our best to mimic a pancreas, but we can't do it perfectly. There will be times where the numbers are "off" no matter how hard we try. Then there are times where the numbers will be great, even though we've been more lax. YDMV is so true. Diabetes doesn't only vary from person to person, it varies with the same person - many times for no reason.
     

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