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Our first week of pumping?s

Discussion in 'Parents of Children with Type 1' started by cgbphp, Oct 15, 2011.

  1. cgbphp

    cgbphp Approved members

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    My son is two and has only been pumping for five days and I have had to change sites everyday(which he hates). And it seems like he runs higher now than he did when we were using novolog and lantus! Our endo at our first post diagnosis appointment told us she was a pump doctor and pushed for a pump until we decided to go that route. A week in and I feel like its a mistake. I am really hoping that it gets better. Since he hass been running in the 300's I have even cut out snacks completely and tried to add a few extra cards when bolusing just to get him to come down and nothing is working. I also feel like I didn't receive the greatest pump training. Any advice and is it normal for kids to run high after being started on a pump? I just feel like my endo promised so much flexability and he would be able to eat what he wanted with ease and those things ar not happening. I know it has only been 5 days and maybe I exspected to much. Any advice welcome
     
  2. hawkeyegirl

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    Pump start can be a stressful time. Try to be patient. It will come together.

    Are you in touch with your endo for help with making adjustments? Typically when you see 300s around the clock, the basal it set too low. Check with your endo, but I would probably give basal an increase of 0.025 around the clock and I'd also check often.

    Why are you having to change the site every day? If they're not staying on well, there are products to help with that (Skin-Tac, tape, Mastisol, IV Prep, etc.) Also, if you don't already have some, ask your endo to prescribe numbing creme (EMLA). We use it for every site change, and my very needle-phobic son can't feel them at all.

    Stay with it. Pumping really is great once you get the kinks worked out! :)
     
  3. lisamustac

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    Let me first start off by saying not every pump start is smooth. It sounds like you need your ratios tweaked. Running in the 300's isn't normal. Once you see a pattern (keep logs) you need to call the endo and have them help you adjust ratios. The pump should give you more flexibility and cutting out snacks is not the answer. If adding more insulin per carb isn't working maybe your basal needs to be changed.
    If you aren't getting the support you need maybe it's time to loom for a new doctor. Don't be discouraged it will get easier.
    About the site issue why are you changing it everyday? Is it falling off? If you are having that issue try skin tac. You can order it online and it will have the site stick on better.

    Sorry you are having trouble but stick with it and make the changes with your endo and you will wonder how you ever lived without it.
     
  4. kiwikid

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    Our pump start was also terrible. I felt there was no benefit for Rachel. We kept being told that we couldn't change our I:C ratios until we got the basals set. In fact our I:C ratios were so way off we would never have got her down.
    How much insulin are you giving in a bolus through the pump compared to when you were injecting? Has it changed much?
    I went back to giving set amounts of insulin in units through the pump while we sorted things through.
    Some basal amounts can also change radically. I would do as the previous poster and increase by the smallest amount you can around the clock and test often.
    We used ice before each site change which worked really well as Rachel couldn't tolerate (and still doesn't) the dressing over the EMLA.

    Hang in There.. :cwds::cwds:
     
  5. bnmom

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    Our pump start didn't go smoothly - for the 1st month my son and I were both ready many times to throw in the towel and go back to MDI. But as others have said, if you can hang in there you really will LOVE it once you get things worked out.

    Whichever pump you have - call them and tell them you need a rep to come over asap. Omnipod was awesome about helping us over the phone and our local rep was great about coming to the house to help us through the rough patch. She also gave us a sample pack of the products Karla mentioned (skin tac, different tapes, etc) so you can try them and see which works best for you before you buy them.

    I would imagine the other pump companies would be the same. They should be happy to help and give you more training...after all, you are their bread and butter.

    I can tell you that after our first month of being ready to throw it out the window, we got things worked out and we'd never go back to MDI now. The freedom and flexibility your endo spouted will come, just hang in there. :cwds:
     
  6. cgbphp

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    I was told to call in everyday and upload on the computer which I have done. We have changed the basals and carb rations both once. Which was a nightmare in its self when they called and told me to change the basals they gave me numbers I couldn't even set into my pump. Which I didn't realize until I got off the phone with the endo office and was trying to input them and couldn't. So when I tried to call right back the office had turned off their phones for the day. So I was in panic mode had to have the endo paged through the hospital. And it only took him two hours to get back to me. I have changed the site everyday because I figured there was something wrong with them since he was running so high. I did notice that before he had the pump his carb ratios were 30 to 1 and now then are 38 to 1. Is it normal for them to increase? Or should they be the same? I guess I just exspected a little more hand holding from my endo during this stressful time and when I call the nurses seem annoyed that I am calling even though they are the ones who told me to call daily.
     
  7. MomofSweetOne

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    We're three weeks in, and our start was similar to yours with blood sugars in that range. We were told to call in after three days, but after two, I couldn't stand watching my daughter laying around because she was so dizzy. Our CDE tweaked her basals, and within three hours she was herself again. Then, her insulin needs halved in the next week, and this week they're increasing fast again. But, like you, I was ready to be done with the pump after the first 36 hours...but she wasn't. I'm glad we stuck with it. It's getting easier.
     
  8. cdninct

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    Hi there.

    Sorry to hear you are off to a bad start. As I mentioned before, it was several weeks in before we started to think that maybe, possibly, we hadn't made a mistake in switching over to the pump.

    I think he is running high because your endo was probably quite conservative with the rates at first to make sure your son didn't tank unexpectedly. He/she probably prefers that he run high until you can work him down rather than run too low right off the bat. I think that may especially be the case given your son's age. Looking over our first set-up numbers, 12 out of the 13 rates or ratios have been altered to increase the amount of insulin our son receives! Just keep working with the doctor's office or clinic to get the settings right.

    Ignore the nurses' attitudes, and call as much as you need to. It is the clinic's job to help you manage your son's diabetes. Numbers in the 300s require a change in the plan, so it is not like you are phoning for no good reason!

    Also, I don't think the site changes are necessary unless his numbers keep going up (or unless the endo advises it). If he is holding steady at a high number, or if his numbers are going up AND down, I would think the site is just fine. This is especially true if you are using steel sets. We use the Sure-Ts, and we have only had one site failure (and it was an obvious failure--his BG kept going up despite multiple corrections). Don't take this as gospel because my knowledge is limited, but the sorts of highs you describe wouldn't make me do a site change.

    One more thing to keep in mind: when we did shots, we only checked before meals, before bed, and sometimes in the night; when we started on the pump, we started checking before and 2 hours after each meal (for us, that really means before each meal and snack) and at midnight and 3am. His numbers now do not look as nice as his numbers on shots, and that often worries me until I remind myself that the more often you check, the more out-of-target numbers you will see. I don't know how much you checked before, or how much you are checking now, but if you have increased the frequency, keep this in mind!

    Hang in there--it will get better! There will be more flexibility with food. When you get your rates tweaked, your son will be able to eat in much the same way he did before diagnosis. I know you had high expectations and things are not going to plan at the moment, but I was in your place not long ago, and I can honestly say that after the first few weeks, the pump began to meet or exceed my expectations.

    Good luck!
     
    Last edited: Oct 15, 2011
  9. kiwikid

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    If you are using Steel needle sets then you can pretty much eliminate site problems as a cause of your son running high. They are all we have ever used.

    Maybe you could try going back to your previous carb ratio. It worked for us. As long as you are testing often you can't go too badly wrong.
    Don't hesitate to post your results/ratios/basals here as there are experts on CWD who can offer suggestions. They have certainly helped me in the past. :cwds:
     
  10. cgbphp

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    Thanks everyone for all your help and comments it helps to know that I am not the only one who has gone through this. We are using the sure T sites so I will definately stop assuming its a site issue. I only took a week off work to be home with him during this transition. So I guess I maybe a little more anxious knowing that come Tuesday I go back to work and I am going to have to rely on others with the transition. I was just hoping I would have it under better control before my return to work. Probably a little unrealistic on my part
     
  11. cm4kelly

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    Keep pumping!

    You didn't mention how old your child was. I had the SAME EXACT feelings and experiences that you have, but keep pushing through.

    When my son (then 3 1/2) started on his pump, our numbers were higher than they had been on MDI. I was so frustrated! But slowly over time, we continued to make adjustments. It is just a slow process, mostly because with children you don't want to make insulin adjustments too quickly.

    Our A1Cs though have been at 7.1 (which they thought was low for a three year old) and then 7.6 - which the doctor was happy with.
    If you haven't read the book PUMPING INSULIN - you can order it through amazon - it is a great resource.

    After a while, you will be comfortable enough to make basal and carb/ratio adjustments on your own by looking at patterns of blood sugar. Right now, you have to rely on your doctor or diabetes educator to help you My changes.

    My son changes sites every other day - we only get 48 hours out of our site (we use the rear end). If I go longer than that, he goes high. My husband, on the other hand, can get 3-4 days out of his sites, so every one is different.

    The only other recommendation I would have is to give it a little more time and evaluate the type of sites you use. I started with Silouhettes under the recommendation of my ENDO, but I hated manual insertion and it always seemed blood sugars were high - maybe because of me. I went to the mio springloaded inserter and have used them ever since. (WE use minimed revel).

    STay in there and you will be glad you did.
     
    Last edited: Oct 16, 2011
  12. Amy C.

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    That is good to stop assuming the highs are because of site failure. If he is high all the time, the basals are too low and need to to tweaked up.

    The endos office has to work with you on this. They are the ones who set the rates too low and need to help you edge them up.

    There was little correspondence between MDI and the pump for my son.
     
  13. emm142

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    I had serious problems with highs and ketones when I started pumping, but mine was partly due to kinked sets. Just keep going, and raise the basals where you see highs. It should get better. :)
     
  14. Sarah Maddie's Mom

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    I agree. I feel a bit that your practice let you and your son down on this. He shouldn't have had to have all those site changes :( Please don't let this put you off pumping, and I hope your son is able to understand that it won't always be like this. Your endo should have been doing more to address the highs. I'm sorry it's been difficult.
     
  15. cgbphp

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    Sorry if I didn't mention my son is 2 years old. I didn't know that it was acceptable for me to change the ratios on my own. Also another question I had was.. I was told when he was first diagnosed that the novolog only lasts two hours. And since he has been pumping I have been checking his BG every two hours like I was instucted to do. And of course two hours after meals he is high but his pump won't let me bolus what it says the correction should be because it says he has however many units of active insulin it subtracts from the correction. So I started going through my pump info and his pump is set that way for insulin to be active for 3 hours instead of two should I change this setting so I can bolus what is actually needed or are all pumps set on three hours instead of two?
     
  16. nanhsot

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    Most insulins have a duration of 3 hours, not 2 (apidra is shorter though). I'd keep it at 3 or you risk stacking (meaning treating again for carbs already covered by insulin). For my son novolog has a pretty strong tail, meaning that right at the end it packs a punch, so I would not personally want to be correcting prior to the end of 3 hours.

    We had a VERY difficult pump start as well, hang in there, it does get better. We had to increase basal significantly and change type of sets as well. We started with straight in sets and settled on angled. But with steel sets I agree that it's unlikely a site problem, it sounds to me like you have a basal problem.

    It's not unusual to need more basal via pump than via lantus. It's also not unusual for basal needs to vary hugely hour by hour, my son's 5am basal is double his 9pm basal need...that's the beauty of the pump, being able to tweak so specifically for their needs.

    You should not be making these type changes alone, however, or IMO even on our advice....by the time we were pumping I had been changing basals and ratios fairly regularly and it sounds like maybe you were not doing that while on MDI? If you have not been making the changes on your own I WOULD NOT do so, contact you endo/CDE and get their guidance. For that first weeks I had the CDE's cell and was given permission to call at any time (including after office hours)...she actually texted my son daily for a while...so you need input from them at this time.

    Good luck. Pump start can be quite tricky and it can be VERY frustrating. My son was high for months it seems before we got it down. It's worth it though~keep up the fight!

    edited to add: Someone mentioned the book "Pumping Insulin", definitely recommend that, I have read and reread that several times, great advice. There are also services you can pay for remote advice on this if your endo is not helping, others have used Gary Scheiner's website for that, look him up if you feel you need more help than your endo is giving, though of course there is a cost associated with that.
     
  17. roo'smom

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    When my dd started on the pump they were very conservative w/ her basals and ratios, preferring to run her higher at first. Your office definitely needs to work with you on this. Each kid is different but my dd needed significantly more basal insulin on the pump than she did on MDI. Once you get the kinks worked out, and the settings generally where you want them it gets much better. If you still don't like it you can always go back to MDI and revisit pumping when you're both ready for it.
     
  18. cm4kelly

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    Keep setting on 3 hours

    Keep your insulin setting for 3 hours for children. I think my husband uses 2 hour duration - but maybe that is for adults.

    You can make adjustments on your own, but I WOULDN't at first. You need to have more guidance from your endo. After you have been doing this a while you will be able to make adjustments on your own.

    Call your endos office with numbers and ask for help with changing your settings. Let the changes take effect for at least 3 days and then make more adjustments (small ones) as needed.
     
  19. cdninct

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    I would leave the 3 hour duration as it is. Ours was originally set for 2 hours, and it took me several months to figure out that my son's duration is about 3.5 hours (it's set on 4, but I sometimes overrule the machine). Everyone is different. While I would keep working on getting your clinic to get the rates and ratios sorted out, if you ever feel like you really need to correct for more than the pump is suggesting, when you get to the final screen before the pump actually starts pumping, you can manually add or take away insulin by using the up and down buttons.

    If you want to test the length of time it takes for the insulin to more-or-less finish taking effect, next time you need to give a correction in the middle of the night (more than, say, 4 hours after the last food bolus), give the correction then test every 30 minutes or so until he is in range or the numbers stop dropping. This really only works if the basal rate is holding him quite constant and quite close to his target range, so you may not be able to perform this test until the other problems have been resolved.

    Hope you will see improvements this week!
     

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