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Getting Discouraged on Pump

Discussion in 'Parents of Children with Type 1' started by SamandVicki, Oct 29, 2010.

  1. SamandVicki

    SamandVicki New Member

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    Frusterated over high #s and cant sleep. Sam has been on the pump since July 2010. He is pumping with Minimed. Ever since the pump his numbers have been all over the place. I get frusterated that I don't have someone to work with me on a daily basis. When i e-mail his downloads sometimes it takes days before i hear anything. I wish the Dr would look at his numbers on a more freuquent schedule. We have had trouble with highs at night and every time the dr does a change its so little that i don't even see a change. i feel like we are never going to get him level. We have had a few times that I wasn't sure what was causing highs and it was a site failure. Im guessing that was it because he goes down after a site change and a couple of times the old site looks infected.
    How do you know how many days to keep the same site? My dr. says 3 days.
    It seems like there is always something. when we were on shots Sam hardly ever went over 300. now it seems like he is always high. Will this get better?
    I'm seriouly considering going back to shots.
     
  2. Charliesmom

    Charliesmom Approved members

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    Like you, I get very little help. I had to start making changes on my own by a month into pumping. Have you read the book Pumping Insulin (i think that the name)? Have you done any basal testing?
     
  3. Amy C.

    Amy C. Approved members

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    I would be frustrated as well if I didn't know what to do with out of range sugars. Has the doctor showed you how to make any changes on your own? When you test fairly often, there is a way to decide if the basal, bolus or correction needs to be fixed.

    Are you counting carbohydrates?

    I would think that reading up on how to manage diabetes on the pump and stepping out to make your own changes is a good idea. I read through Pumping Insulin and applied to my own son, but I did have some help from the endo's office.

    I wouldn't give up, but I might look for an endo who was more helpful.
     
  4. Tiff's mom

    Tiff's mom Approved members

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    I abslolutely agree with the pps.

    You so have to get that book and start changing things on your own.The doctor can only help so much...

    You have to start with figuring out the basals, we pretty much went from the beginning, by using the formulas from the books, establishing basic rate for day and night and then gradually changing them as we went along... For us having 2 hour brackets worked fine

    you can work on carb ratios and correction factors after the basal is set.

    and write everything down, that was the only way for me to see what is going on, blood sugar, food, activity...

    Don't get discouraged, pump takes a lot of adjusting and learning, you actually never stop learning,. Surely theres no logic in Diabetes, but pumpwise its mostly mathematics, the settings have to be just right...
     
  5. Denise

    Denise Approved members

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    We were only allowed to get "help" from our doc the first month or so..then we were weaned to "you make suggestions, we'll tell you what we think" and then after about 2 months it was "make the changes and if they aren't working or you need more help, give us a call". They didn't just dump us and we did go to a prepumping class that showed us how to make changes. At this point, I would try to make your own changes and see how it goes.
     
  6. diabetesgoddess

    diabetesgoddess Approved members

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    Pumping doesn't make life smooth. Depending on the age of your son, how long he has been out of his honeymoon period, etc can all have an impact as I am sure you know.

    As someone said, step one...read JOHN WALSH's " Pumping Insulin". Highlight it. Keep it close by. This will be your pumping bible. Its a great place to go back to even years later (speaking from experience:) )

    Watch for air in his cartridges and kinked sites. Test basal rates, test carb to insulin rates. Do not rely on your doctor. A good doctor will allow you and your son to learn and make adjustments on your own. Remember fats, exercise, etc are all going to have an impact and now that you are looking at more micro control you will see those blips more obviously.

    We keep sites for 3 days. When paying for them out of pocket we could see a site in for up to 5 days but not a good idea.

    Hang in there. The pump is worth it...honest :)
     
  7. selketine

    selketine Approved members

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    Welcome to CWD!:)

    I agree with the suggestions above. Another way to go is using Integrated Diabetes (http://integrateddiabetes.com/) - Gary Scheiner is a well known figure in CWD circles and has written a book "Think Like a Pancreas" - worth reading. He does remote (by phone/email) consultations for a fee. We used his services for awhile when I needed some fresh eyes on my son's numbers and he was very helpful. If you want some immediate feedback - sending numbers back and forth, etc. - he will do that.

    I'd suggest getting his book - very helpful info in there on getting the basals right by doing basal testing. Definitely sounds like you need to start there and work your way towards the I:C ratios.
     
  8. Jacob'sDad

    Jacob'sDad Approved members

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    Welcome!
    You very likely will be in for a rude awakening if you go back to shots. Chances are his insulin needs have just gone up and he will need more insulin whether on the pump or not. It doesn't take much of a change in insulin need, especially with basal, to send BGs high.

    As others have said, it would be good for you to start making changes on your own. Read the books suggested and also, you can post his pump settings here on the forum if you would like, and then show a couple of days worth of numbers and what he ate. I'm sure you will get some good advice.

    He won't suddenly have great BGs even with the best advice. There are too many variables. What good advice can do is get you headed in the right direction and make you confident that you can make changes that will continue to improve his numbers.

    His doctor may have been right to make small changes. The problem is, he is not available to make those small changes frequently enough. There's nothing wrong with small changes, but you often need to repeat after seeing the results.
     
  9. PixieStix

    PixieStix Approved members

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    Absolutely agree w/ others--I would read both Pumping Insulin and Think Like a Pancreas to empower yourself with the knowledge needed. Agree w/ small gradual changes but if your son is routinely >300 months into pumping that is crazy. If your doc's office tells you only they can make changes...time for a new doc IMO.

    Do you use the Carelink software that came w/ your pump? I would upload the pump every few days and evaluate changes made, keep making changes until BGs are in range. Methodical starting w/ the basals, but keep at it and soon your son will have good control and so much easier that shots.

    Welcome to CWD too!
     
  10. haffgus

    haffgus Approved members

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    A few ideas that helped us early on with unexpected highs: Make sure you are getting all of the air bubbles out of the reservoir before changing the site. Even the small champagne bubbles can combine to create large pockets of air in the tubing (you can hold the tubing up to a light and look for bubbles/air pockets). If you do see some, you can disconnect and fix prime them out. When disconnecting for baths/showers/etc. small pockets of air can get in the end of the tubing. When my daughter disconnects for showers, she always does a 2 unit fixed prime before reconnecting, to push out any air in the end of the tubing. Before you fill the reservoir with insulin, push the plunger up and down about five times. The black rings on the plunger have a coating on them that then lines the walls of the reservoir to make it move smoothly. I find that rarely are highs due to a "bad site". We haven't had a bad site in over two years. We change sites every 2-1/2 to 3 days based on what works with our busy schedule. Keep your own records and look for patterns. When you see a pattern of highs/lows three days or more in a row, make a change. Look at the basal to total daily insulin first to see that the percentage is in line with what your doctor wants it to be. Then change insulin to carb ratios. Get the book "Think Like a Pancreas" as previously suggested. There are charts in there that will help you set correction factors, basals, bolus ratios, etc. What is your insulin duration set at? We use Novolog and most often have it set at 3 hours. We will go to 2 hours if she is going through a period of insulin resistance (teen hormones). Try to stay away from fast food, ice cream, pizza until you get things under better control - those foods can cause crazy highs even 3-6 hours after eating.
     
  11. simom

    simom Approved members

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    Which set?

    Chiming in because I don't see this suggestion: you may need to try a different set. We struggled with inconsistent numbers and "moderate" highs (he was getting insulin, but we wondered if it was all the usual YDMV things). We would regularly find sets that were SLIGHTLY kinked (so the set was still giving some insulin, but not as effectively) or had crystallized insulin in the cannula.
    We switched to the Sure-T, which is a needle set. Problems with kinks and crystals have been solved - and as a result, we've seen much more consistent numbers.

    There are lots of ideas to try here - but you may want to consider trying alternate sets, as well.
     
  12. Flutterby

    Flutterby Approved members

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    Pumping is a lot of work. Especially in the beginning when you are trying to fine tune things. Have you started to make changes on your own? There are plenty of people here who can help you if you'd like to post some numbers.. are you logging? Can you see any patterns? like is he always high after a meal, or after a certain meal, or is he just high ALL the time, do corrections help? does he go low at all?
     
  13. SamandVicki

    SamandVicki New Member

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    Thank you all... Every one of your responses were helpful to me. I am going to get my book out again and start reading. I am ready to make some changed on my own, but wasn't sure if i should. I do have the confidence to do it and Sams # are so important to me. Thank you again and i may be getting back to a couple of you with more questions. Vicki
     
  14. SamandVicki

    SamandVicki New Member

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    I have the book. I read it once right before Sam got the pump but I have never used it. I have been relying on the Dr not sure if I should be making any changes on my own. But after taking some advice from this site, I am going to go back to the book and see what I can do on my own. Thank you. And I have not done basal testing on my own. My Dr. has changed my basal rates slightly since we started.
     
  15. JackyH

    JackyH Approved members

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    What sets are you using? When we used the quicksets we would have lows immediately after changing and by end of day two and all of day three our numbers would be hokey. A friend suggested changing the set as he might have an allergy to the Teflon cannula. We switched to sure-Ts and have never looked back.
     
  16. Lisa P.

    Lisa P. Approved members

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    Our pump start was absolutely awful.
    I think for two reasons:
    1. We needed to use steel canulas for my daughter, the teflon ones just don't work right for her.
    2. Her basals were set very, very wrong (CDE scared to set them too high, so they were under half what they needed to be). When basals are very, very wrong it throws everything off.

    We had to quit, put it away for a month, figure out how we wanted to do it and try again. We also got help from the pump rep, who knew a lot more than the CDE did about it.

    You may prefer MDI in the long run, but know that sometimes how pumping starts is not how it winds up. It's still fairly new tech for some endo offices and they are not always able to help us as much as we need, it's rough.
     
  17. Our3girls

    Our3girls Approved members

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    Sorry you are having trouble. i have not read all the responses yet so I may be repeating some but these are my suggestions.
    Check your sensativity that must be changed with the bolus changes and can make a huge difference.
    If you are struggling with infection of the sites (we do too) change it every 2 days and see if that helps. Just because 3 days may work for most it may not for your child and that is ok just get the rx for that amount.
    Maybe if you post some of your info about your child (age and size) and also your basal times and amounts and your bolus info you could get some great help from the veterans here (which I am not :)) but there are lots of people that are really good at helping tweek things and have the experience to go with there suggestions.
    Do you know what basal testing is? No carbs from breakfast to dinner or over night and check every 2 hours...? Our doctor says if their bg increases by 30 from the 1st bg (breakfast) reading to adjust the basal setting for the time before by only 1, so very slowly. That is how we do it others may do it differently.

    Well, good luck and I hope you can get it figured out quickly but don't give up!!
     
  18. StillMamamia

    StillMamamia Approved members

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    May I ask how old your child is? Could there be a major growth spurt going on, so you're seeing highs at night?
    I'd start with increasing basals overnight (do it by whatever increment settings you have, one at a time) and see if that helps you start off the morning on a better foot. Then move on to the daytime. You may need to adjust the meal boluses as well.

    As someone else suggested, give a try to different infusion sets. We "usually" change ours every 3 days, but there are times when we can go longer. We use Sure Ts and used to use Contact Detach with the old pump.

    If you're able to, I think Gary Scheiner ("Think Like a Pancreas") has some online/phone consultations. Here's the link:

    http://www.integrateddiabetes.com/

    Good luck!
     
  19. slpmom2

    slpmom2 Approved members

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    Hi, and welcome to the boards.

    I agree with everything everyone else has said, and just wanted to highlight a few things:

    - We get 3 1/2 days out of a set, but I know people who only get 2 days and then numbers go out the window. If you're consistently seeing higher numbers on day 3, try changing earlier.

    - Start with basal testing, because nothing else will work well if his basals are off. I think Pumping Insulin has a section on how to do basal testing. If it doesn't, come back here and ask. This is critical for getting the settings right. We did a lot of it at first, and it was a pain and dd was scared that this was going to be her new normal, but now we only do it if things aren't going well. Once basals are pretty good, then you can look at sensitivity, carb factors, etc.

    - By all means, go ahead and start making changes on your own! You are the expert on your child's D, not your endo. You live with it every day, while your endo sees him just a few times a year. If you make big changes, just test more often to make sure he's not going dangerously high or low - you have the skills you need to handle those things if they happen, and testing more often will let you stay on top of it.

    Sorry your endo hasn't been more helpful. This board is a fabulous resource - feel free to come back often as you get this figured out!
     
  20. Ashti

    Ashti Approved members

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    Our DD is still on MDI, but whenever I read studies comparing MDI to pumping I let her know. The one cited below lists and concludes that (in lay-person's terms) - "there is a steep learning curve when you go on the pump, but in the end it is worth it". So, this is to encourage you to keep trying!

    Below is how they really worded it:

    RESULTS: Switching from multiple injection therapy to insulin pump therapy presents challenges in the short term.Over a longer period, use of this technology is associated with a significant improvement in quality of life for the users and also a change in the relationship between the patient and their specialist healthcare provider.
    CONCLUSIONS: Insulin pump therapy has additional qualitative benefits beyond improvements in glycaemic control and reducing the risk of hypoglycaemia for people with Type 1 diabetes.

    from:
    Continuous subcutaneous insulin infusion in Type 1 diabetes: patient experiences of 'living with a machine'.
    Todres L, Keen S, Kerr D.

    http://www.ncbi.nlm.nih.gov/pubmed/20873363
    (listed in Jeff's weekly e-mails on October 6th :) )
     

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