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How active are you in setting your child's pump settings?

Discussion in 'Parents of Children with Type 1' started by rutgers1, Jan 31, 2014.

  1. rutgers1

    rutgers1 Approved members

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    Since going on the pump, I have been known to tinker with the basal rates a bit....raising the basal here, lowering it there. However, everything else (carb ratio, correction, insulin duration, etc.) was always set by our doctor.

    If you asked me how I liked the pump, I would say:
    1) I love it for the flexibility -- bolusing without having to pull out a needle, ability to do a temp basal, etc.
    2) However, I don't feel his blood sugar readings are much better than when on injections.

    So, with that said, after not being happy with the settings and feeling like something was wrong, I emailed my doctor and asked if we could start over with the pump at very basic settings. I asked if we could set a constant, 24 hour/day basal rate. I then suggested a 24 hours setting for each other major setting. He agreed.

    Since we made the change to my suggested settings, his blood sugar average has been 15 lower, and most of his readings have been around 150. The only time he has approached 250 has been when we have tested him while food was still digesting and he still had active insulin. He has gone low at night after exercise, so we have to figure that out. However, overall, things have been working out great.

    I guess my point of writing this is that, now more than ever, I think that the parent knows best. The doctor can only see what the pump gives him, and what he doesn't see is:
    - how much exercise the kid had that day
    - whether a high was due to a fat spike
    - whether the child was sick

    I used to rely on him to make all the key settings changes. But now I realize that this isn't rocket science and that the factors above that he doesn't see are very important. I'll still run most things by him, but I am going to be more bold about suggesting things. He is a great guy and, luckily, he is open to suggestions.
     
  2. mmgirls

    mmgirls Approved members

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    I have made all the changes to her insulin regimen for her for at least the past 5years, sometime after she turned 4( 3years into DX) I decided that there were too many times that I knew what they wanted me to do was not the right choice because of x/y/z.

    They were always looking at her weight, 50/50 rule and TDD to make changes, and well my dd does not follow many rules.

    I got myself the pumping insulin book and understand where the Dr.s are coming from but can use this information and suit it to my active child.

    Every once in a while the Dr will make a gentle suggestion and a "Can you try this setting" because I see this happening, and if it sounds reasonable I will try it
     
  3. mmgirls

    mmgirls Approved members

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    BTW

    we have scraped basal patterns and varying ratios many times over the years, sometimes you have made so many small changes that it is hard to see the real issue.
     
  4. Mish

    Mish Approved members

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    We haven't relied on the doctor/CDE since 6 months post diagnosis. Maybe a question here and there, but we were always told that we were going to be expected to learn, with their help, how to make all changes. Your son has been diagnosed since 2009, I'm surprised they haven't pushed it on you long, long ago. Unless you feel uncomfortable, or really unsure, and I don't think you are; you've been around, you ask intelligent questions, I think you know what you're doing, you really should feel free to go and do what you need to do without running it all by the doctor. In other words, you're not a newbie. You have this.
     
  5. Wren

    Wren Approved members

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    The CDE asked us what our ratios were before pump start, then set them once when we started the pump. As soon as we left the office, we started adjusting ourselves. For a few weeks we emailed numbers in once a week. For all the reasons you mentioned, and especially puberty, I can't imagine it any other way. If we have a problem, we can call or email anytime.
     
  6. kirsteng

    kirsteng Approved members

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    We're only 10 days out from our pump start, but I'm already quite confident that I can take it over. I read "think like a pancreas", and "pumping insulin" before we did our pump start, so I have a good idea how to assess what needs to be changed. In the past 10 days, I have had to upload our data to diasend daily and speak with either a CDE or an on-call endo about changes that need to be made. Each time I have analyzed our own data and run my ideas by them, to see if I'm thinking along the right lines. So far, so good. Makes me confident that I can continue to adjust to his needs over time.

    I also think you can take this on - like you said, it's really not rocket science. Document your changes daily, and worst-case scenario, you can always change it back! ;)
     
  7. StacyMM

    StacyMM Approved members

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    I make all of the changes. I'm not sure when that began, but sometime in the first year, I'm sure. Maybe 6 months? Now, we do see the endo quarterly and she gives suggestions. Some we make, some we don't. The biggest issue there is that she'll be looking for patterns and will suggest something and I say, "Oh, I already dropped that" or "That was changed last week" because I'm pretty active about changing things. That and the fact that I do both kids' visits at the same time and sometimes she'll ask something and I answer, then correct myself with, "Sorry! Wrong kid! It was hers, not his!" :p

    At pump starts, the office policy is that the endo determines the original settings. We do training with that set up, then change it on our own...sometimes an hour later ;) The endo tends to be a little more conserative than I am about changes and with puberty, conserative feels like I'm chasing highs and lows. I tend to react a lot more quickly just because of the wide range of insulin needs (more with DD than DS, just a girl vs boy puberty thing, I think.)
     
  8. Beach bum

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    And if you think of it, the endo still is working off the MDI settings, which, most likely, you have already tweaked yourself. At least, that was our case. I remember them saying, OK, your current plan is xyz, so we will start with abc.
     
  9. Shopgirl2091

    Shopgirl2091 Approved members

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    I have made all changes since 1 month post pump start, I haven't felt the need to ask for the approval of the doctor's office or ask for help. If I ever felt the need for help I guess I would, but I track everything, I know my son's body and I know what it needs - I guess that is my super power :catchu: For the first month after pump start we were in contact with an Animas nurse who we had to talk to every couple of days. Throughout that time I was chomping at the bit, I couldn't wait to be let go and be able to just do it myself.

    One reason I don't like asking our doctors office, other than the fact that I already know what changes need to be made is that sometimes they take a few days to look at numbers and get back to me and I don't want to sit around and have my son have crummy numbers for a few days just because I am waiting around on someone else. I make the changes and they work, I don't need to wait around for somebody else to tell me something when I can see what is needed and do it myself.
     
  10. Guru_rb

    Guru_rb Approved members

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    We got on to the pump after just one month of MDI. And our endo was very clear in her expectation that WE have to learn to do it on our own. Even during the first week where she was guiding us, whenever I would call her with the numbers of the day, she would first ask me " OK, what changes do you think we should be making to the settings?" And she expected me to call her with some thought on the next course of action and not just read out the readings to her. After that one week I have been making all the changes.
     

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