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Nurse Practitioner rant

Discussion in 'Parents of Children with Type 1' started by Olivia'sDad, Feb 14, 2013.

  1. Olivia'sDad

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    So our daughter has had 3 consecutive days of unexplained highs starting after lunch and continuing until late in the night. This is following a 24 hour stomach bug last weekend. My wife emailed our Nurse Practitioner at CHOP saying that we think maybe her basal needs to be increased after explaining the entire situation and asking for a phone call.

    Instead of a call, the response we got back was "I totally agree with you- It sounds like Olivia needs more basal insulin- I would increase her Lantus dose and continue monitoring her- After her illness, she may stay at that higher level of insulin or may return to previous lower doses... you never know- Hope she feels better soon"

    Am I alone here in thinking this is totally unhelpful? How much are we supposed to increase it by? Should we be splitting the dose? I'm very frustrated with these nurses, this is their job. Not a hobby, not a favor, it's their job. How about checking on what Livy's current dosage is and giving us a suggestion, or calling us back like we asked so we can figure it out together. CHOP has a reputation for being the best in the area, but this is our second nurse practitioner and the first was just terrible.

    Livy is on 2 units in the morning, current plan is to increase it tomorrow to 2.5 in the morning. Without someone telling us, we can't get comfortable increasing it any more than that. Thanks for listening, any suggestions about the nurses or the dosage is welcome.
     
  2. kim5798

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    We always to increases at 10% at a time...trial & error. Test often & since you are using dexcom...you have realtime info.

    At some point, we all know more than the nurse practitioner does about our own child. Change the dosing...you can always change it back if it doesnt work.
     
  3. Beach bum

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    Agreed, it wasn't helpful at all. Don't know how long you've been on the diabetes journey (not in your signature), but it's not fair to someone new in the game to just say, yes make a change.
    Our practice always gives us dosing changes in writing (via email). If for some reason we converse over the phone and she gives us a verbal directive, then it is followed up in writing.

    ETA: We make changes on our own, but if I'm wracking my brain with why something isn't working, that's when I reach out to them.
     
    Last edited: Feb 14, 2013
  4. nebby3

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    I am assuming that .5 is the least you can increase by so that is what you should do. I don't see any reason to begin splitting the lantus if you weren't earlier unless there are other new patterns (eg higher at night but not during the day).

    Honestly at this point I am annoyed when the nurse or endo give me specifics because I am so used to changing the doses on my own and I know the particulars of our situation a lot better then they do.
     
  5. selketine

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    Eventually the doctor wanted me to learn to make the adjustments myself. If this is a new insulin for her - or you just started a pump, etc. that is different. However the doctor was clear with me that I should go ahead and make slight adjustments on my own if I thought the basal or bolus wasn't working. After the first couple of months after diagnosis, I never talked to the doctor about making adjustments but I did them myself - gradually - and made sure to test a lot.

    I think it would be helpful to talk to them at your next appointment about how to go about making these adjustments on your own so you have an idea how to proceed. I know for I:C ratios I'd go up or down 1 until it seemed right (so if it was 15:1 I'd go 14:1 or 16:1, etc.). Basal changes on the pump are a bit different but I'd also adjust them gradually.

    If you think these highs are due to the illness and are short term - you could try giving more insulin for lunch and dinner rather than adjusting the basal - especially if she stays in range otherwise.
     
  6. Sarah Maddie's Mom

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    I would think that problematic if you guys were newly dx'd but you have been at this a while, I think. We got some hand holding the first 6 months or so and then were largely expected to make changes on our own.

    I would consider it a sign that your practice thinks that you are ready to tweek things on your own.;)
     
  7. Melissata

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    I agree with the others, that you will feel much better if you make your own adjustments. I really believe that parents that manage their own kids instead of waiting for advice from the endo have far better outcomes. Who knows more about your child than you do? If you need help feeling confident, then get one of the books suggested frequently here, or if you already have some, get them out and use them to help you.
     
  8. Meredithsmom

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    Can you call them? I agree about making your own changes, but if I really want to talk to someone, I call until they talk to me. Even if I have to leave 6 messages.
     
  9. kyle and ryans mom

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    Start increasing on your own and test a lot. Once you start making changes on your own, you will feel more confident.
     
  10. Bigbluefrog

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    We felt better about making our own adjustments after classes. Did they offer some form of education to help with tweaking her insulin?

    Another source of good information was the books "Using Insulin" and "Think Like a Pancreas"

    When we increase insulin, we usually follow through with night checks for 3 days to avoid hypoglycemia.
     
  11. Kaylee's Mom

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    I agree with everyone and making your own adjustments is great but sometimes it is also helpful to speak to the endo. I have been having a hard time with Kaylee's after breakfast numbers so have been on the phone a lot with the endo office. I apologized this morning for calling again and was told they WANTED to know how she was doing and to please call tomorrow. So while have confidence in yourself is wonderful .. I also like knowing her Dr. cares and is there for help when needed.

    Crystal
     
  12. Mommy For Life

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    Our team helped us make lots of changes after dx and the months following, but now I just make the changes in very small increments. DD is still honeymooning so little bumps in basal rates or CR will do the trick. I think if you felt the nurse's response wasn't what you hoping for, pick up the phone and talk to someone who will give you the answers you are looking for. Also as others have replied, making the changes yourself will give you more confidence to make the minor tweaks in D care. I only call our endo when numbers are so out of whack I have no clue what to adjust. :cwds:
     
  13. shannong

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    I had similar frustrations with my son's diabetes team. I felt like I was always getting pat answers via email, even when I would specifically ask for a call back. I felt alone. That's the hard part. Feeling alone in all these decisions. I remember reading a blog from a parent of a T1 who talked about how there is no other disease where they just hand you the medication and say "good luck with that". That's exactly how it felt.

    I would say this: be very upfront that you want more support. Second, read and learn as much as you possibly can. The reality is, that very quickly you will be the expert on your son and how insulin changes, etc. affect them.
     
  14. Bigbluefrog

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    It is reassuring to have someone on your team to get help and support from.
     
  15. Olivia'sDad

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    Thanks for all of the responses. We do make small tweaks but have never made a change to her basal on our own in the 2 years since diagnosis. I'm not sure that I've totally come to terms with being the one responsible for all of these decisions. Not that I'm not educating myself and safely tweaking what I can, but sometimes I just want someone to tell us what to do.
     
  16. bisous

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    Can I just tell you what works for us in these cases? I add up the total amount of daily corrections and add THAT much to the basal insulin (in your case, Lantus). If that makes you nervous, you can be a bit more conservative. The good thing about testing frequently and having been at this for awhile is that if you see lots of lows, you'll be prepared to catch them and you can always back off the Lantus dose the next night.

    Also, like she said, make a note of what your current Lantus dosage is at. I have seen DS go up temporarily due to illness and then rapidly need his regular basal insulin dosage again after the illness has passed.

    I do think it is a sign she thinks you're ready to start making your own adjustments and that does show confidence in your abilities!
     
  17. Heather(CA)

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    I am going to gently say that if you don't feel comfortable making adjustments...Call again. But it is in your and your daughters best interests to learn to make your own adjustments.

    Nothing makes me more angry than an Endo that does not teach the parents how to make adjustments on their own.
     

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