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Out of control!

Discussion in 'Parents of Children with Type 1' started by parentsofk, Jul 28, 2014.

  1. parentsofk

    parentsofk Approved members

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    It's been a while since I've been on the forum here, and it's not because everything has been going swimmingly.
    We find it really hard to keep our daughter in a decent range for long, and this has been going on for many, many months.

    One of the things we wrestle with all the time is that we find it really, really hard to match insulin to carb digestion. Matching insulin to carbs is straightforward enough, but we really wonder if she is digesting more slowly than typical.

    Pizza is a classic food that requires Extended/Combo boluses, but we have to do it for many different kinds of food. When we don't do EBs it seems she goes low and we say "that was too much up front", but then we run into crazy highs when we do them, it seems!

    Another variable is pump site failures. We seem to get a lot of them - not necessarily complete failures, but plenty of partial ones, where she just doesn't seem to be getting enough insulin.

    A few months back we had a glorious few weeks in which she was nearly always in range. It was unbelievable! But I knew it was not because we had "got it down" it just happened to be what her body was doing, or that sites were working well.

    She was diagnosed at 1 year and is now 12 and we're probably also a bit burnt out. I probably need to re-read some books or something.

    Anyway! I guess I want to start using the forum again and picking brains.

    So...
    1. Has anyone else encountered what might be slow-digestion in their child, making it hard to match insulin delivery to digestion? Any tips?
    2. Are there any newer books out there anyone would recommend?

    Thanks!

    Paul
     
  2. Sarah Maddie's Mom

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    Hi Paul - I think what you are experiencing is totally normal. It's REALLY HARD to mimic a healthy pancreas, especially as puberty begins to raise it's head. As much as I hate to reduce things to a technological solution I, with hindsight and 12 years of D under our belt, would suggest adding a dexcom G4 to your routine.

    It doesn't cure all ills, but it is really nice to see what's happening and to ward off highs with a small correction or prevent lows with a basal reduction as you figure out how best to try to bolus for tricky foods.

    I wish we had had access to this technology years ago. It really is a game changer. -)
     
    Last edited: Jul 29, 2014
  3. Ali

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    Agree. Also suggest starting with basics. If you are not using a steel set try that to help eliminate wondering if she is not getting the insulin as opposed to needing more. You may need to change sites every two days. Make sure you are rotating site locations. Redo the basal testing. Review carb and sensitivity ratios. Sometimes it helps to just almost start over with everything. Tedious but if you change one thing at a time, give it about four days and then change the next thing on the list you will get there. The CGMS will help you to figure stuff out more easily especially during times of growth, hormonal activity, and exercise what to adjust. Good luck. Your Endo team can hopefully provide you with some help and reviewing the books actually does help.
    Ali
     
  4. parentsofk

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    Thanks to you both. I have been wondering about trying a CGM again. We trialed one of the early ones and it was hopeless! I've read good things about the G4.
     
  5. nebby3

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    My dd is similar -- dx at age 1, now 12. We have had periods where we felt the same way, that insulin was just so slow to work or didn't match up well. At your dd's age I would think hormones would be a big issue. She could be way more insulin resistant as puberty kicks in and it can come and go or seem worse after meals. Do you have a CGM? My dd refuses to pump anymore but the Dexcom has been helpful in seeing what is going on. It could be a good tool in your arsenal. And honestly is bad sites are a frequent issue MDI is not so bad, at least if your kid doesn't mind frequent shots per meal. One thing I have read recently from the diyps people (if you google diyps you will find it) is that having insulin really working when a meal is eaten helps. This is more than a 20 min prebolus. They are talking about giving whatever insulin you safely can an hour before meals so it is really going when the food hits. We tend to give my dd insulin at 6:30ish in the AM because she rises at that time of day and have found that having that insulin on board gives is less of a post breakfast spike so it seems to work for us. Last thing is that slow digestion can be an effect of D so it might not hurt to discuss it with your endo.
     
  6. Lee

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    I was recently offered a piece of advice with my out of control teen that really struck home. 9 years ago I was educated to the teeth and back on managing Type 1. She was a little kid so did not receive the same education. Yet at 16, she is expected to know everything, because we have taken the same dumb journey. So now I am trying to get her educated like I was at diagnosis so she understands more then just the word 'complications'.
     
  7. missmakaliasmomma

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    I have to say that after 4 years with us, I still can't figure pizza out. It's just one of those things. I try different things every time and nothing seems to really work. The best I got was not reaching the 300s :/

    I use the combo bolus for pasta a lot which worked so well up until last night of course but I'm hoping that was just a fluke.

    I do recommend getting a cgm. It is wonderful. My daughter has been using it for a month now and it's made our lives much easier. I also would try steel sets too, we had a lot of issues with the flexible ones. We have to change sites more often in the summer than when it's not 90 out.

    Out of curiosity, how do you normally handle pizza with the extended bolus?
     
  8. kim5798

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    I had never thought about this before, but it definitely could help. Maybe she would get something out of reading all the books and educational material, as opposed to what she has just learned by osmosis all these years from living it.

    Thanks for the idea.
     
  9. Lee

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    Osmosis was the exact word our CDE used.
     
  10. Darryl

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    The Dexcom G4. BG will still be hard to control but you will be in control.
     
  11. parentsofk

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    All signs point to a CGM!...and better note taking.

    As far as Pizza - we do it very rarely - but we've done something like a 50/50 combo, with the extended part running for 4 hours. We've done 40/60 for chinese food and sometimes that has not been too bad.
     
  12. pianoplayer4

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    I am a few years older than your daughter but I've been through something similar (as have many here)I would second the suggestion to get a cgm (I am on the dex and love it!) they have really improved them over the past few years and personally I have found mine to be amazingly accurate. I had been having so much trouble with numbers, and trying to match food and insulin, timing it all right and everything. When I started the dex I realized that my basals were all way high and my carb ratios too low. SOmetimes this would work if I was eating at the right times, but other times it was a disaster.

    The dex has saved my life on more than one occasion=)
     

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