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Need Pump reassurance

Discussion in 'Parents of Children with Type 1' started by nanhsot, Dec 6, 2010.

  1. nanhsot

    nanhsot Approved members

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    Week 1 of pumping and while he is enjoying the freedom, we're nowhere near balance.

    In one week's time he's ripped out a site, had blood in the cannula, ran out of insulin and gone out of town with friends!

    Handled all that, he is doing really well with it all actually, but we're dealing with some highs that just won't come down until night time, rises again at dawn and we start the cycle over again. I feel like we're just throwing insulin at him. I'm working daily with his CDE so not really wanting to go into specifics on numbers (it'll only confuse me!), we both feel it's a basal issue along with a dawn phenomenon issue and we're raising those progressively.

    My questions now though:

    1. Is this normal to have highs after beginning to pump? For some reason I thought their insulin needs went DOWN on pump, something about being more efficient with constant insulin vs lantus, but oh my goodness, he's using a ton more insulin than ever before, mostly in corrections.

    2. What is a general time frame that it takes to adjust your life and dosages to pumping. Life was pretty easy all in all, so I feel like we're starting all over. I expected that, but was curious how long it will feel like this. Weeks, months, days?? Give me some hope here!

    Thanks
     
  2. chbarnes

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    The first few weeks can be pretty rough. Don't give up! It gets better.
     
  3. Emilyk1054

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    Obviously everyone is different, but our A1c went from 6.6 to 8.2 after starting pumping. HUGE leap in my eyes. Brooke was all over the place. Almost gave up on pumping and went back to shots, but she wouldnt have it.
    4 month or so later, and we're still learning and figuring everything out. Of course things are much better. We had shots down to an art, and we will this too... with time. And so will you...
     
  4. mandapanda1980

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    We are on week 4 of pumping...and I feel you!

    We constantly battle highs. Everyday. If she's ever in range its rare and doesn't last. I'm also in constant contact with her doc and educator and adjust her carb ratios, basal, isf every few days. It is very frustrating for me, I try so hard to prevent highs...give her boluses 1/2 hr pre meal(especially when high) and give a good diet(as best I can for a 5 yr old! ;)

    I can say that the pump sites WILL get better. We struggled at first. Same problems you mentioned. What are you using? We switched from the quick sets to sure t's. Looove the sure t's. Never have any kinking issues and hasn't ripped out once and for a child her age that is great. I would suggest talking to your endo about a topical numbing cream you can get as a prescription. Site changes are so much smoother with that!

    I hear it takes a while to adjust to pumping and get numbers in order, so I just try to relax and be patient and be grateful they don't get the mdi anymore :)

    If you ever want to vent to somebody in a similar situation just message me :) its nice to chat with others and have that support. This website is GREAT for that :)

    Good luck and hang in tere. It'll be worth it(for both of us) in the end!
     
  5. Amy C.

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    It sounds like you don't have the basals right. Hopefully your clinic is offering suggestions on basal testing.

    I have noticed that a .1 hourly increment increase in a basal prevents a high that 4-5 units could barely bring down.

    Once you get the basals right, you still stop the corrections and the insulin usage will go down.
     
  6. CamsMom

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    2 months into pumping for us and the first couple of weeks were horrible.

    I was told that it takes a bit for the Lantus (or long acting insulin) to work its way out of the system and get accustomed to the basal rates.

    Best of luck and hang in there. It will get better.
     
  7. nanhsot

    nanhsot Approved members

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    Definitely agree, it's a basal issue, plus a strong dawn phenomenon.

    CDE is working with us very closely, I call her at least daily with detailed numbers and text her more (heck, I just texted her when my son passed his driving exam for his learner's permit if that tells you how comfortable I feel with her!).
     
  8. NomadIvy

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    Nancy, one of the reasons for us pushing for the pump was that the Lantus wasn't working for ~K.
    When we were given the "pump test" by Gary there was a question on how long you think it'll adjust to the pump or how long it'll take to get good control. It wasn't days...it was more like three months.

    Right now my main issue with the use of the pump is changing infusion sets (I'm still a nervous wreck, but I did it once when she was sleeping and it went well), and the placement of the pump and tubing (she's tiny).

    What helped me with the basal rates was months and months of logging everything since diagnosis. I basically ignored everything the doctor here and even the pumping guru told us(Gary Scheiner himself -- Gary, if you see this, know that I listen to most everything you say :)) . The doctor started her off with a .15u/hour basal at night, and .20u/hour in the daytime (not sure of the exact times). Our CDE told us to start with .15u/hour and do basal testing at night.

    However, from months of logging..I could tell that her highest basal needs were from 9pm to 12mn... and her lowest was from... anyway, I won't tell you the numbers. Just that I knew where the higher needs were and the lowest needs were. Based on those and a calculation of what her total basal should be, I moved the numbers around 'til I got a daily basal total close to where I thought it should be. Since you were on shots for a number of months I'm sure you can gather from those where his highest basal needs were. And you also know that he has a strong dawn phenomenon. That should help.

    Based on those and her dose of Lantus and her TDD, I kept tweaking her basal. The nerve-wracking thing is how much to up the basal when you know it needs to go up. So there's lots of tweaking and lots of sleepless nights. I was checking a lot (still am).

    I think first you need to relax, give yourselves a few hours not thinking about it. Then with a pen and paper in hand, and all his numbers from the past few days, start writing down in a way you'd see patterns. Then based on those you can write something like this:

    12am - 4am .. lowest basal need...
    4 am - starts to rise...

    We each have our own way. But I really think taking a break for a bit and then tackling it again will help. Good luck.
     
  9. sbsmith1804

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    Just into our first 3 weeks of pumping here and YES the numbers are all over the place then there is a balance and now it went up a bit again! It sure beats the Lantus shot and the fighting to check his bs. Ds is doing fabulous at checking more often and eating better! I can't wait to find his "happy medium"! We've used almost 2 vials of insulin in this first 3 weeks!!! Whew that's alot! We know it won't always be this way! We LOVE our Medtronic training nurse!!!! Pumping was the BEST choice for him!!! Stay positive!
     
  10. Luke's Mom

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    Hi Nancy - I see our boys were both diagnosed the same day:( We too just started pumping and by week 2 - I wanted to throw that thing out the window!!
    It is definitely a basal issue -- I totally agree with Nomad Ivy - we tweaked and tweaked - did alot of checking especially at night because he would rise steadily throughout the night -- many times i gave him an injection at night to bring him down because I knew it would work and it did !! And the next day we started all over again with tweaking the basals at night until we got it right - it took about a week, but so far so good -- it's work - but he loves that pump. Now if only i could get him to put a site anywhere but his stomach !!! :rolleyes:
     
  11. NomadIvy

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    (Sorry for the hi-jack Nancy).
    When I was forced to change her site at night while she was sleeping due to a badly bent cannula, I numbed her upper hip (she said it feels like it's on her back) and that's where it is right now. She asked after that if I could please change the next one while she was sleeping since she realized she didn't even feel it. Maybe if you did it while he was asleep...
     
  12. obtainedmist

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    My daughter (18) is almost 8 weeks into the pump. There are so many variables that go into the mix and with practice, you get better and better at finding the best sites, the best infusion sets, the best way to inset said infusion sets, the best basals (until they need to change again and again!!) and on and on! There is an enormous amount of trial and error and what works for some doesn't work for others.

    Things get better and better, though. Don't give up!! After a while, the occasional blip doesn't seem to freak one out as much. You just get really good at problem solving and eliminating one thing after another until you determine the problem. The pump isn't easy, though, and I think we all hope for something to do everything perfectly because this is such a consuming disease. The first week, she gave up for a day and just went back on Lantus until she felt comfortable pumping again.

    Sometimes we just look at it like we are a living science project without a real scientific procedure because of all the variables. But just remember that with more experience, it really does get easier and easier! :)
     

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