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What's the most confusing thing about diabetes for your child? Working on a project to improve diabe

Discussion in 'Introductions' started by wrkemble, Mar 27, 2014.

  1. wrkemble

    wrkemble New Member

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    I'm a PWD Type 1, and I'm working on a thesis project for improving diabetes education materials for newly diagnosed children.

    Things are very different from when I was diagnosed in the mid-90s, so I wanted to ask parents what some of the more confusing or complicated parts of current diabetes education are for you and/or your children. What works well? What needs clarification? Is there any one format that seems better than another? How do you keep your child motivated?

    I've been living with diabetes for almost 20 years now, so I'd really appreciate any insights from families who are experiencing this for the first time. :)

    Thanks!
    W. Kemble
     
  2. Jeff

    Jeff Founder, CWD

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    I verified this request. Please help if you can.
     
  3. CyndiF

    CyndiF Approved members

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    Since I am only six months in, I think I can tell you how confused I still am, which hopefully will help others. First, I find the "honeymoon period" concept to be difficult to understand and there really isn't a whole lot out there about it - every book I read has a paragraph or two, but it doesn't really explain fully. For us, we went home from the hospital with some Levemir and Humalog for "correcting", but we are still trying to figure out when to do that. It took me a while to realize that the reason your child will be 240 after a meal one day and 90 the next is because their body randomly spits out insulin and furthermore, these fluctuations are totally normal during this period. What still confuses me about that is, what fluctuation is "acceptable", and when do you correct (or bolus) - with the meal, two hours later, etc?

    The other thing I find difficult to get a handle on are all of the other things that affect BG - we seem to learn them as we go. Illness (your kid isn't even eating, but they are in the 300s - why?), exercise (do you correct a regular amount or less, knowing they will come down and in fact, can drop a lot)> My son also takes ADHD medicine and we are having such a hard time getting consistent numbers, as it seems to spike him, his appetite is suppressed, but by dinnertime, he is way low because the meds wore off and he hasn't eaten enough during the day).

    Finally, I still cant figure out how to count carbs and combine the carbs with his current number when we do bolus or correct. An example: If my son is about to eat 50 carbs and his number is 200, does he get two units for the 50 carbs, plus one for being at 200? This is also where the random insulin production kills us - he can get 2 units, eat like a horse and be below 70 two hours later, then other times he basically stays at 200.

    Not sure how much of this is my own personal confusion or how much of it is universal to all parents of newly diagnosed kids, but I hope that helps.
     
  4. mamattorney

    mamattorney Approved members

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    My daughter was diagnosed a year ago, so pretty recently. I think these three things would have been great:

    1) I think the most confusing part of current diabetes education is everything beyond the normal. I understood what to do on a regular day, but felt like the education I received on sick days, or other extraordinary situations was a blur. I would love to see educational materials that were based upon hypothetical scenarios with some basic recommendations. Things like: my child has a fever, my child is vomiting, my child is going downhill skiing, my child is starting a new, active sport; my child is going to a water park, my child is stuck high, my child is stuck low . . . .

    2) Another thing that confused me was when to alter the Lantus dose vs. changing the I:C ratio. In fact, I don't think I ever really figured that out. I never really had a good grasp on what 1 unit of Lantus would do to my daughter's BG over 24 hours, so I never really knew when to up it or by how much. I almost always defaulted on changing I:C ratio because I felt like I could measure those effects better. By the time my daughter attended her pump start, when the CDE set her basal rates, she based it on 2 units higher Lantus saying that (based upon weight) I had likely tightened the I:C ratios not because she needed it for carbs, but almost as additional basal. We were at 1:8 for breakfast and 1:10 for everything else and at pump start the I:C ratios were set at 1:15 with increased basal.

    3) I think that electronic materials would have been great. I have a computer/phone/tablet screen within arms reach virtually 24/7. The binder I received upon discharge is on a bookshelf in my house. I would have rather had a flash drive with all the materials on it. In particular, I received a book with a lot of basic carb counts for foods without labels like fruit and vegetables and startches. I bought a calorie king book, but if I could have that little book in a searchable .pdf that I could place in a google drive it would have been awesome. Actually, I think a current calorie king book or a amazon gift card for the electronic version of the current version of Calorie King would be an excellent addition to the discharge materials.
     
  5. wrkemble

    wrkemble New Member

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    That's really helpful. Getting started is tough, especially during the honeymoon phase. We received a binder when I was diagnosed in 1995--strange that it hasn't changed much. I think you're right--digital materials for these things make a lot of sense. The emergency training scenarios are a really good idea!

    Is there one area that's been confusing for your child? I ask because the project I'm working on is geared specifically toward children. It's essentially going to be a game-focused start-up package, so knowing those things will help.

    Carb counting is tough--I still struggle with it. Calorie King has a couple of apps on the iTunes store. I use the CalorieKing Food Search one--there's a free version that's pretty good, and an upgraded version that includes a wider variety of food. Unfortunately Google Play doesn't have Calorie King apps, but there are a few free apps like GoMeals that have received good reviews.
     
  6. wrkemble

    wrkemble New Member

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    Cyndi, this is really helpful. Thank you so much for responding! I completely understand what you're talking about here. I've been going through a few small binders that are given to parents, and the information about the honeymoon phase does seem a little vague. It sounds like you have similar concerns to mamattorney with what to do in emergencies.

    As a parent, Do you think it would be helpful to have some sort of infographic comparing the active and peak times of the different types of insulin, or maybe even how long it takes the body to break down carbohydrates of different foods? Also, do you feel you and your son were given sufficient information on how to recognize and handle hi/low blood sugars?
     
  7. mmgirls

    mmgirls Approved members

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    One of the insulin makers has playing cards with foods an basic carbs, I would love to have it be done with carb factors instead and have a dry earse card to figure out the carbs of the actual weight of the item eaten. I would be great to have a carb factor information taught from te get go.

    I think a better understanding of how high protein and fat meals are absorbed more slowly is a super concept to understand from the get go.

    a better understanding about insulin peak and duration.

    a better understanding of stacking insulin

    a better understanding bigger boluses being stronger working longer

    terms that other might use

    other types of regimes

    all available devices/apps/treatment options

    listings of possible 504 accommodations and the reasons

    a preloaded Ipod that has the apps already there for you to play with and trial.

    listing of the current and active advocates in the area

    a family/individual mentor program

    phone numbers to the local services that might be needed
     
  8. MomofSweetOne

    MomofSweetOne Approved members

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    My daughter has asked me why her I:C and her ISF don't match. If 25 carbs raise her BG 100 points and she would need to take 2.75 units to cover that, why would a correction dose to get her down that same amount only take 1.4 units?
     
  9. KatieSue

    KatieSue Approved members

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    My daughter was older, 13, at diagnosis so it was a little different. We were admitted to a children's hospital and all the materials/videos were very much geared toward a much younger set. There was nothing really for her age group.

    An awful lot of information gets thrown at you very quickly. I like the suggestion of electronic materials. I also think it would be super duper helpful to have some follow up training after things have calmed down a bit and you're actually thinking, having questions. When you're thrown onto the hospital out of the blue it's not the best time for really absorbing information. Yes you can ask questions at appointments but you're often rushed.

    And stop with the exchanges stuff. They tried to teach us that and we asked why we couldn't just straight count carbs, they seemed a bit taken aback but let us do it. It was so much simpler and easy to understand. Not to mention that a lot of what the dietician told us was for exchanges so anything under 15 carbs didn't "count". My kiddo loves cucumbers which the dietician explained to us was a "free food". Well it does have some carbs and if you eat a half or whole one as she often does she needs to count them. It took us quite a while to figure out that a lot of the "free foods" on exchanges were what were causing us problems.
     
  10. CJA

    CJA New Member

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    Not to toot, persay. But Childrens Hospital of Wisconsin, Milwaukee has flow charts with exactly that information (sick call protocol). It is great. See if you can get it. Anytime he cannot eat, has higher numbers for a while, above a certain range, can eat but has ketones, etc. I cannot say how helpful this flow chart is. Please try to get for yourself. They also provide an exercise chart with recommendations for what number to target and/or how many carbs should be eaten for the amount, type and duration of exercise you plan on getting. On the back of this chart they have recommended type of carb to be taken. Its awesome.
     
  11. mmgirls

    mmgirls Approved members

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    Please try to "post" a link to the information you are trying to reference. I would love to "see " it.
     

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