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Burst my bubble......

Discussion in 'Parents of Children with Type 1' started by phaunt, Mar 15, 2009.

  1. phaunt

    phaunt Approved members

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    So we got the okay on the pump from our endo (yay!).. we are going to hold off till Summer because Lilly has missed so much school already after her dx and I'd like to do it when we're all home and can adjust easier. So we're looking at probably June for her pump.

    The thing is that now that we have the go ahead on it, I'm having 2nd thoughts. :D

    The doctor's thoughts were that we shouldn't be going on it because we think that medically it's going to be a huge benefit (that you can get as good of A1Cs with MDI as with a pump), but that's not what we were really wanting it for.

    I am hoping that a pump will give us a bit more freedom with her Diabetes, free her up from all the shots, and allow us to be more precise with her insulin dosages. I am hoping it will allow her more freedom with what she eats (to let us cover for small snacks/etc).

    So are those realistic expectations?

    What are the CONS to pumping? The endo explained that you have a much higher risk of DKA with pumping since you have no Lantus/long acting insulin, it's all the novalog/short acting, so if you have a kink in the site/etc you can get into trouble quicker.

    What other things are harder or a pain with pumping? I want to be going into this with my eyes wide open and not thinking that pumping is going to solve all our problems. I know it will probably introduce new problems as well as solve some that we have now.

    So let me have it.. good/bad/ugly about pumping? Any links you can give me are welcome too!
     
  2. jcanolson

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    Those are exactly the benefit to pumping that we expected and found.

    As for the risk of DKA, our dd doesn't develop ketones quickly, so we have had no issues on that end. Yes, it is a small electronic device that can (and sometimes does) break down, but we all develop our emergency plans and just move to plan 2 for a day or two. The pump start, especially for younger ones, can make for a stressful couple weeks for mom and dad as doses are tweaked, and those first few site changes are horrible (I cried after every site change for the first month.) Even with those issues, and others I may have repressed from my memory, the benefits that you listed are well worth it. We wouldn't go back to MDI without a fight.

    Good luck in your decision.
     
  3. fredntan2

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    I don't really know if there is any good/bad/ugly with pumping.

    it just gives us much more freedom.

    this is a no brainer. what's your endo's problem?

    yes it will take some time to get your basals/bolus's right and as she grows these will change, but the same is true for mdi.
     
  4. Sarah Maddie's Mom

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    Maddie's been pumping for almost 4 years now and I honestly don't see a downside. Perhaps it's a bit of a concern for dressing a girl who loves dresses but aside from that I think it's a fantastic way to deliver insulin. And the ping with it's remote takes that issue out of the picture. ;) As for DKA, personally I think that's only an issue of you don't test and stay on top of the numbers, which among the CWD parents is not the case. So count us n the very pro-pump camp. :D
     
  5. Charliesmom

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    After we got the okay I had second thoughts too. It's so hard to get out of my comfort zone. It almost felt like we were starting all over. However, it has been the best thing we have done. Charlie is so much happier and more confident. It's the small things like being able to get a hot coco from Starbucks after getting groceries or having an extra choice of grapes or a whole banana for a snack that has made such a difference in him. One of the things my DH and I love is being able to give him some insulin before a meal and then the rest after. That has made mealtime much more pleasant.
    Site changes are hard. We went a few weeks without Emla cream and are still paying for it. He has some pretty bad anxiety. He loves his pump though. He actually woke up crying and screaming one night. All he would say is someone took his pump and he wanted it back. I had to take it out of his pack and show him that he still had it. Then he giggled and said thanks mommy and went back to sleep with a smile on his face. That was when I knew we did the right thing.
     
  6. Mom2Boys

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    We fought to get Luke on the pump as soon as we could and then when it arrived I started to question if it was the right thing! I think most parents have that moment of: what did I do? I can 100% say that it was the right decision for us and I'm so glad we have Luke's pump!

    I can't really think of too many cons--maybe that they have a device attached to them all the time, but honestly, I don't even think about that much anymore. If you test often enough, the risk of DKA really shouldn't be too much greater than on MDI. If you have 2 high BGs in a row you are supposed to check for ketones and change the site. They also have infusion sets with steel canulas so the risk of kinking is completely eliminated.

    As for the pros, there are so many! It really does offer the child more freedom to eat when they want. You can do many different basals throughout the day and night so you can really mimic the pancreas better. You can do temp basals when they are sick and then easily raise or lower basals whenever necessary. You can fine tune your carb ratios and give tiny corrections that are impossible on MDI. We love pumping and you would have to pry that pump out of my hands before I would go back on MDI. I know people can make it work on MDI, but with a young honeymooning child the pump made diabetes manageable and we have the A1Cs to show for it!

    Good luck and I'm sure you won't regret your decision, but if you do change your mind you can always go back to MDI.
     
  7. hawkeyegirl

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    Really, for us there have been virtually no cons. I do believe we have better control with the pump, and that probably most people do.

    The whole DKA thing is WAY overblown. Jack has had ketones exactly twice since we started pumping. Once when I had to turn off his basal for the entire night to keep him from crashing, and once at a waterpark where his site fell off and I just left it off. Both cases resulted as a decision by me, and not a pump failure. Really, if you're vigilant, DKA is not going to happen as a result of pump failure.

    The benefits are just as you listed. We find the pump incredibly freeing. My plan is to never have to give Jack a shot again. Seriously.
     
  8. momof3sons

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    The pump start was challenging. The class was long and overwhelming. It took time to get our caregivers (both parents, grandparents, school nurse) comfortable with all aspects of the pump and it also took time to get our constantly changing basal rates and ICR/CF correct and that seemed overwhelming for a bit. Our son instantly knew how to operate the pump. When you put an electronic device in the hands of a child, they are not intimidated or afraid.

    Ten months later, I can't imagine going back to MDI. We have more of a sense of normalcy. He can eat dinner when he wants, have snacks when he wants, eat in the amounts he wants, correct lows and highs more quickly. We would never go back.
     
  9. selketine

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    I think you have your expectations right.

    As for the DKA issue - William is extremely resistant to running ketones and rarely does so even when sick. That being said, we had a bad set one night and even though we check him during the night (usually more than once) we didn't catch that the high blood sugar was due to a bad set (long story...but we were on vacation at the time and he was eating out every meal and we were guessing all the carbs so his bg's had been all over the place anyway.) He got sick quickly and we were a step away from having to go to the ER.

    That has only happened one time. He has gotten other bad sets but we caught it more quickly. I HIGHLY recommend getting a Precision Xtra blood ketone meter to check ketones - especially if it is night time and you are in any doubt. If you see ketones forming you can nip the problem right there. I would say that ketone meter kept him out of the hospital that time too - we could tell that his ketones were clearing quickly - the urine strips run hours behind so we wouldn't have known.

    Not telling you that to scare you - but I VERY much respect the issue of being 100% dependent on that pump giving basal insulin. We still test him overnight but it is a concern if you don't plan to test overnight at all. If you decide to go with a CGMS this solves some of that problem - assuming you can hear the alarms.
     
  10. KellyMama

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    Yup, exactly. Pumping gets 2 thimbs up from us. :D We've found it to be life-changing and in all the ways you hope it will be.
     
  11. Abby-Dabby-Doo

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    These are "our" reasons.
    I wanted other people to care for her. It's a lot easier teaching them to push buttons than it was to draw up insulin in a syringe. I mean that for the school nurse, grandparents, a playmates parents, girl scout leader, birthday parties, sleepovers, the list can get lengthy. Also less scary for them (and Abby) if that makes any sense to you.
    Abby has more eating freedom with less shots. I can bolus her for a 2 carb stick of gum. I can give her insulin before she eats, while she's eating, for seconds, and dessert without having to give her multiple shots. Shots were getting in the way of eating more food because she didn't want another shot.
    During illness I can turn down the pump or turn it up depending on what kind of blood sugar levels were talking about. With NPH or Lantus it's there and you can't take it back. I do have to admit that when ill and on MDI you have less of a chance of developing ketone's because of the Lantus, or NPH in the system.
    I didn't enjoy carrying around a vial of insulin, and worrying about the temperature all the time. With the pump it's replaced every 3 or 4 days and I've never worried about it's temperature. Honestly unless we're going more than an hour away I don't take anything extra along regarding the pump-a site change or insulin.
    I didn't mind giving an injection in public, but Abby did. I didn't like having to find a place to dispose of the needles.

    IMO the biggest CON of pumping is getting started. We really struggled with it, but not everyone does. I was more than ready to pull my hair out more than once! It's a little like starting over. A whole new vocabulary and ways of doing things. In our situation if we would have started pumping with a set that didn't involve a cannula I think we would have had it a lot easier. It's tough trying to figure out the basals, and by that I mean how much insulin she needed at different hours of the day (using fast acting instead of Lantus). A correction factor, ratios for meals, and trusting IOB when she eats again. Once you get over those humps it's smooth sailing. You just have to know you'll get there, and it won't happen in the first week. :cwds:

    Good luck!
     
  12. phaunt

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    Thank you SO Much everyone! I love the amount of input I can get on the board.... I hope some day I can give back a bit, I feel like I'm the annoying new kid on the block always poking everyone asking questions. :D
     
  13. M&M's mom

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    We were scared TO DEATH when we took our first steps to begin pumping. For two years I kept saying "not for us, we do fine on MDI" but more and more Makenzie wanted to go for the pump. Once we started I kept thinking "why didn't we do this 2 years ago!!" It has brought so much ease into our life. I know our endo's office gets concerned that parents/kids will THINK there is less testing but there isn't, actually at the beginning of pumping you test more, but once you get going it REALLY is so much better. I think you'll be happy with your pumping decision, and if your not you can always go back to MDI.
     
  14. sam1nat2

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    Sam was on such small doses when we started pumping it was so nice that he could choose what and when to eat!!

    I do remember feeling overwhelmed that a device was going to be dosing him instead of me.

    Now, were going on a pump vacation due to scar tissue. As scared as you are to go on the pump, I"m scared to go off!!
     
  15. Diana

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    This is so how I feel. I would hate if we had to go off the pump - even for a day. It has made our lives so much easier.

    My son has said that he hates having the pump. I almost died. But then he told me that he also hates shots, but he knows he has to do one or the other, and he would much rather have the pump. Whew.

    We have been pumping 2 1/2 years and had no pump failures. We've had a few site failures, but only one which has led to ketones. We caught that fairly early though, because we test frequently.

    We like pumping because it is much more flexible. My son's basal needs vary widely from day to day and I love being able to adjust basal on the fly depending on how that particular day is going. I also like that the pump is doing all the math for me so my brain doesn't have to work as hard (although it does have to work to get the settings right...)
     
  16. suzyq63

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    I think it's very common to have second thoughts about pumping. Once we ordered Alison's pump, semi-panic set in for a few days. I think it was the change that was scary rather than the familiar MDI. For the first 6 months after diagnosis, I had no interest at all in a pump for Alison. Then it seemed like all of a sudden, my mind was changed. Alison has been pumping for 5 months now and we both love it! So far I can't think of any down side to pumping. We only recently had our first site failure and Alison's ketones only got up to 1.1. We changed the site, corrected, and she was negative for ketones in less than 2 hours. The Precision Extra ketone meter is also a huge help.

    Good luck.
     
  17. saxmaniac

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    We had a pretty rough pump start, but I think it's mostly because it happened to align with Alex's final, dramatic exit from the honeymoon. That made it really hard, but it wasn't anything with the pump itself - it was just D kicking me in the teeth. There's a 17-page "pump start" thread that I wrote onto from time to time, and everyone patiently helped me through it.

    I considered myself pretty educated on the topic, and it still was harder than I thought. People say it's like starting over... except with not having a honeymoon to fall back on, it seemed like it was a lot harder than starting out. Some people are luckier or better prepared, and have good pump starts.

    But now? We can do a site change in barely 3 minutes. Temp basals on long car trips. Wireless bolusing when he's eating with other kids and THEY DON'T KNOW! Oh, and 1 point improvement on the A1C.

    There are annoyances, but overall it was a great choice. And we always have plenty of Lantus in the fridge to fall back on, if we ever change our minds. It's not permanent. Bottom line - having an extra tool in your D-buttkickin' kit is a win/win.
     
  18. phaunt

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    Thanks everyone! I am LOVING hearing all this info. I am definitely going to talk to my endo about the Ketone Blood meter for when we get started. Lilly has never shown ketones except one trace amount that went away within a few hours, so I wasn't too worried about that either.
     
  19. Caldercup

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    We've been doing MDI since October and working diligently to get insurance in line for the pump. It **finally** arrived this past Wednesday and I've got the salin trial and insulin start appointments set up already (so we'll be pumping starting with Spring Break.)

    For us, the biggest gain that we expect is the freedom -- my DS's I:C ratio is 1:25 and that means meals have to be either 75 or 100 carbs (a big jump!) I like that the pump will allow him to dose exactly for what he feels like consuming and not some random number he has to hit to match what the pen can deliver. He's most excited about the ability to "graze" and have sleepovers at other kids' houses again.

    He's tried an inset 30 and didn't feel it was any more uncomfortable than a shot and we used baby oil to remove the tape, so that didn't hurt him. (I'm crossing my fingers that this continues to be so!) When he and I calculated the difference in the number of shots he'll need each month, it was a revelation!

    Here's hoping that we both have a seamless pump start and that we find we really like pumping insulin!
     
  20. phaunt

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    Good Luck to you guys :)
     

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