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How many have a NP they call regularly

Discussion in 'Parents of Children with Type 1' started by Andrelaplume, Sep 11, 2009.

  1. Andrelaplume

    Andrelaplume Approved members

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    We are a bit aggressive with our 9 yeald diabetes and its not uncommon for use to post here pump/meter numbers to the MINIMED site a couple of times a month and ask our NP to adjust basal rates etc if necesary. We also call for adjustment advisement when she is sick or about to undetake a lot of activity--is start a sport. Its not uncommon for a conversation several times a month. We also have well visits with her quartely and with the endo twice a year. Is this commonplace out there...are overdoing it...spoiled etc etc. Do you folks adjust your own basal rates etc, calc them yourself...Ex: adjust the nightime one say if he/she runs high at that time for a month or so....
     
  2. emm142

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    I adjust basal ratios daily (as needed) and bolus ratios at needed (less frequently than basals, for the most part).
     
  3. joy orz

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    For the first year, we were probably in contact with our nurse or endo once a week. Then it started to taper off. Now I only call if something goes wonky and I can't get it on track within a few days. We still keep our quarterly appointments though.
     
  4. hawkeyegirl

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    I'm pretty sure it's been over a year since we asked for advice on dosing. We make all changes ourselves, and frankly, they don't even suggest any changes when we go into for an appointment. I probably fiddle with basals a couple of times a week on average. I:Cs don't change that often, nor does ISF.

    We see the endo 4 times a year.
     
  5. sarahspins

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    I've always done my own changes... my CDE told me yesterday at my appointment that she wishes ALL of her patients were as proactive, since it would make her job much easier :) I've adjusted my own doses from when I was diagnosed. Whether on MDI or pumping, the ONLY time I've ever gone with what someone else told me was when I was new to pumping the first time, and I was started off with a relatively conservative basal rate, and instructed to make changes from there.

    Since I have female hormones to contend with.. basal rates and I:C's are a constantly evolving thing. There is only about a 2 week window in my cycle when things are relatively stable, but I'm still compensating all the time for activity (even on MDI).
     
  6. Scribe

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    that's interesting. never heard of that feature. and ... i've been pumping for 10 years and haven't changed my basal rates once. if it works it works. less said the better.
    also ... have you checked on security/privacy? seems odd to go around the horn. why not email directly to your doc?
     
  7. emm142

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    Wow, that's interesting. My body changes daily: stress, hormones, growth, what I can only call random glucose releases from the liver, activity... etc. I can't imagine my rates staying stable for more than a day.
     
  8. hawkeyegirl

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    You've never downloaded your pump? We don't do it all the time, but MM has amazing software, especially for CGM users. It's all password protected, so I'm sure it's secure. (And if it's not, I guess I don't care that much if hackers see my 5 year old's BG readings, LOL.)

    For people who have their doctor do rate changes, it's much quicker and easier to download the pump to the MM software than to type BG times and readings into an e-mail.
     
  9. Scribe

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    nope, never. i see my endo at georgetown univ. twice a year to update Rxs and get test slips. i never consult him if i change things. i've never changed basals because i'm doing exceptionally well.
    and i think my philosophy is different than many ... i eat to the number, always. if i'm 170 and it's 12:30, i wait. if it's 11 and i'm 75, lunch is served. i never eat high sugar, high processed food. i simply don't believe you can eat anything you want and cover it with a different basal or bolus. the idea that diabetics can eat anything and everything is true in theory; not in reality.
    so ... i'm the ultimate boring patient for my endo. steady, no problems; never had a seizure or been incapacitated by a high or low. never gone to the hospital.
     
  10. jilmarie

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    If you haven't changed your basals in 10 years then you're either exceptionally lucky or your pancreas is probably producing a significant amount of insulin on its own.

    Sorry, but I find comments like this totally unhelpful. You're talking to a group of people with growing, active children who are constantly battling changes in hormone levels, schedules, and activity. Obviously their basal rates change on a regular basis!

    I'm glad that a 10 year basal rate works for you, but I don't see the point of sharing that with a parent of a young child who is asking about self-adjusting.
     
  11. Scribe

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    geez, take a deep breath and relax.
    i was not making any comment about the decisions other people make and i absolutely wasn't passing judgment about other approaches. i simply was passing along my own experience as someone who's had D for 50 years, has zero complications, is healthier and more active than most people my age and who has absolutely no complaints.
    period.
    if you don't think it's helpful/smart/wise/insightful that's fine and it's totally within your rights.
     
  12. Scribe

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    and ... my pancreas stopped working in sometime in late 1958-early1959 so it's unlikely i'm still honeymooning.
    as for schedule craziness ... no two days are alike, including the day in 2003 when i was given 48 hours notice for a trip to iraq.
     
  13. jilmarie

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    Hey, I think it's great that you've been complication free for 50 years.

    What I'm saying is that most people would find it very difficult to control their blood sugars during a massive time change such as that. Your experience with diabetes seems drastically different than that of most of the posters here.
     
  14. PseudoJenn

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    We often speak with a member of our team about once a week right now... things had quieted for a week or so, then school started, and that's a whole other ball of wax for DS. He has so many gym periods (this is a great thing!) but plays havoc on his basal's and I:C ratios. He is soooooo insulin sensitive!
    I usually call if I notice a trend happening for 3 days. I consult with her and she helps us figure out what to adjust. I imagine after doing this for another month we'll pretty much be able to figure it out.

    I agree that the CareLink program from MM is phenomenal! We upload every 3 days (after site changes) b/c we prefer that to logging on paper. Every night, I go and log extra carbs or exercise into the log book. That way, when i call someone on the team, they can log in, look,.. and see what I'm talking about. I love the software because I'm a visual learner.. and seeing graphs makes more sense than looking at logs. :)

    We're still only 1.5 months into pumping.. so I imagine after awhile, we'll just do the adjusting ourselves. :)
     
  15. frizzyrazzy

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    Talking to the nurse at your endo's office is standard procedure. :)

    during the first 6 months or so after dx we were in touch with our nurse weekly (daily during the first weeks, it very comforting). After that we learned to change dosing ourselves and after we got the pump we were in contact a bit more until we were comfortable doing our own basal changes and ratio changes.

    kids grow - they are constantly having changing basals and so you'll constantly need to adjust those rates and ratios. Talking to your nurse is great - eventually you'll want to learn how to do it on your own too and your nurse is a good person to help you learn. Think about what you'd like to change, what you think needs changing and then say to the nurse "this is what I think..what do you suggest?" Eventually you're going to get to a point where you know.
     
  16. Sarah Maddie's Mom

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    Well maybe if you we're a child, as in, Children with Diabetes, you'd have some familiarity with this practice?
     
  17. Andrelaplume

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    I really was looking to see how many PARENTS alter their childrens pump on their own, how ften etc etc vs how many us an NP and how often. I can see where an adult migh take charge of their own grown body. A child's changing body is different and I was curious how others do it...so please continue to comment.

    Also, in case of confusion, I do not mean having a NP or Endo physically alter / enter pump settings..WE can do that...I mean computing or tweaking the values yourself OR having the NP or Endo compute new values for you to enter into the pump....

    Ex: you see your child is 220 every noght at midnight or 7am etc....do you bump up the basal a bit or do you call a NP and have them calc how much...
     
  18. 22jules

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    That's how we are. I make all insulin dosing decisions. They always look and say that everything is great. I do tweak numbers often--usually after only day or two if numbers are off during a predictable time. I figure with puberty coming up I need to be "on my toes" and realize that things can and will change often!
     
  19. PseudoJenn

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    In case of confusion on my part.. WE are the ones pushing the buttons to adjust things on DS's pump for basal and bolus ratios.. but we DO consult with a diabetic team member to make sure we're thinking along the right lines of seeing a pattern and adjusting the number the way we think we should. :)
     
  20. buggle

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    When Brendan was dx'd, his endo talked to us on the phone every day to make adjustments for the first 1.5 wks. Then, we were supposed to send numbers to the CDE weekly. That lasted for two weeks and I never contacted her again.

    We had a pretty long honeymoon to learn the ropes, but we figured it all out ourselves (with lots of help from everyone here on CWD). If I had a question about something we couldn't figure out, I'd email the endo. But that's only been a handful of times. We don't even have a CDE.

    I'm sure there are wonderful CDE's, but Brendan is so hard to dose that it's easiest to just do it ourselves. Our endo is completely supportive. We go in for the standard quarterly visits to see her.

    Scribe -- what is your TDD? Some people do make their own insulin for decades. Brendan still makes a fair amount, based on his TDD and his C-peptide tests, but it's fluctuating with him, so it's hard to stay on top of. I'm taking it that the way you were raised, Scribe, in the days of eating on schedule specific amounts of food has made you very disciplined. It's a different way of managing D and it obviously works. We all have been taught to do things differently with our kids.
     

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