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Started pumping - very stressed

Discussion in 'Parents of Children with Type 1' started by ColleenL, Jan 11, 2011.

  1. ColleenL

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    We started pumping last Thursday. Gavin was super excited and the first few days went well. Then we did a site change and it's been terrible since. When we put in the new infusion set he said it was really hurting and he couldn't stand it. We took that out and tried another one. Things seemed OK and then this morning after breakfast his numbers started going high. By lunch he was 456. Ugh. We disconnected and corrected with a syringe. Did a new infusion set and again he complained it was hurting but wanted to keep it in. Numbers were fine after dinner and then at 11pm he was 328. Did a correction and an hour later he was 335. Now I'm a basket case. We never had numbers like this with MDI's. He hasn't be over 400 since diagnosis. Part of me so wants to take this thing off of him and go back to shots. If anyone has any advice and words of encouragement I would love to hear it.
     
  2. melissajm

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    Give it time! The first couple weeks are the hardest and most frustrating! It does get easier!!
     
  3. VinceysMom

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    There is an other mom here who's son started pumping and she is/was having these same issues. From what I read here, it is a process, and possibly a few weeks or more to learn exactly how much basal the kids need while pumping, from what I've read, seems to be a lot more than with a Lantus injection... I know others will chime in, but hang in there, I've heard it is not easy at all in the beginning for some, but gets so much better.

    Kathy
     
  4. Beach bum

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    It is not unusual to see high numbers when first pumping. Most times, it's not the infusion site, but that the basals need to be adjusted. Keep in contact with your nurse/endo, chart everything so that they know exactly what you did and when. This helps in making adjustments.

    Also, some sites absorb insulin better than other for people. For example, arms/butt work best for my child, though stomach/legs only give us fair results.

    Best of luck and hang in there:cwds:
     
  5. Tiff's mom

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    I'm sorry you are having such a rough start, but it will get better.
    Unfortunately I don't remember much about our pump start, but I'm sure it was similar...
    Try to keep a very close contact with your endo team and write everything down, it will help your doctor to figure out the settings.
    Since the pump start we only use steel sets and never had any problems with them, I'm not 100% but I think Animas has an infusion set where the needle stays in,
    I honestly believe those are the best sets to start with, they never bend, or come out, very easy to put in. Also if you know for sure it's not the problem with a site, you and your doctor will be able to adjust his dose properly.
    we only use his bum for sites.
    hang in there, don't give up.:)
     
  6. nanhsot

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    We're on week 6 or 7 of pumping and just now NOT having all the above happen (ok, that's not quite true, he tried a new type of angled set last night and right now he's 300).

    I don't have all the answers but I have lots of empathy and commiseration, we're going through the same process, just a few weeks ahead of you. For us it took a full 6 weeks to get reasonable numbers and now we're tweaking those and seeing MDI type numbers.

    Don't use your MDI insulin needs as a guideline, they are merely a jumping off point. Honestly, just consider that you are starting over and forget all the previous stuff. My son's total basal went from 13 to 20 before we saw good numbers. More than likely your son needs more basal, but you need to be working with your CDE on this. Overall my son's insulin needs more than doubled, but as we've now lowered overall corrections we're seeing a more normal TDD.

    He did one set on the phone with animas, they have a lot of tips to pass along to make sure you're not crimping or making any other mistakes, you might consider getting some site help if you think that's the problem. You can call them and they'll talk you through it, step by step, giving tidbits of advice and such.

    I'm not yet at the point of saying "It's SO worth it" or anything, but I can see that soon we will feel that way! My main advice is to persevere, don't give up. Forget what was and focus on what is (that was one of my big errors, I kept dwelling on needing more insulin when in reality everything IS different so you can't compare MDI to pump).

    Remember that corrections don't work well when high, that's something else I didn't realize until we were tossing insulin at him all day long. The body becomes less sensitive to insulin the higher the numbers, or something along those lines.

    Feel free to pm me if you'd like to, I've been there, I'm still there to some extent, but we're peeking at the edge and seeing glimmers of hope!
     
  7. mandapanda1980

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    This is exactly how its been for us. Were about 2 months in now and starting to see light at the end of the tunnel. The beginning is rough. I remember thinking that she went from some insulin to a LOT more insulin.. especially in basal. Then I:C. Keep in tough with your cde, they helped a lot in the beginning. Then it just comes down to "tweaking" once things start to settle. Site changes become a regular routine that you could do blindfolded if necessary. I reccomend to anybody who doesn't like the pain of the change to get a prescription from your endo for a topical numbing cream. Works great!
     
  8. Luke's Mom

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    colleen-
    It is very stressful - and it is important to note that all our ratios changed I/C and especially our basal requirements.
    The first few days were great - but as soon as we did our first site change all hell seemed to break loose. By the third day I was correcting high numbers with an injection - and for about 10 days awoke 3 times a night to check him - made notes - and changed his night time basals almost daily - until we got it...!!! And once you get it - it really is life changing and amazing... we have three different basals:
    10am - 8pm (our lowest basal setting)
    8pm - 2am (a bit higher basal needed)
    3am-9am (our highest basal setting)
    I also highly recommend the book 'pumping insulin' - i read as well as my son(he's 15 - he actually read it twice) - your guys a little young!
    My next challenge is to get him to use a site other than his stomach. We use the mio infusion set ...
    Good Luck and hang in there - it really is worth it !!!!:)
     
  9. obtainedmist

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    We are three months into using the pump...and I we went through the very same experiences! Have courage! It will get better. I'm not saying that we still don't have situations where the site poops out prematurely or we get un unexplained high, but the freedom it has allowed Molly has been worth the extra vigilance. She tests more frequently...but she can also correct more frequently if things were under calculated...she can also catch if she is going to go low by seeing her IOB. You get better and better at problem solving and also, your technique and intuition gets better with practice. We've also had phone consults with Animas regarding the insets to get tips for good insertion (best tip: hold the set firmly against the skin with one hand and push the smooth "insertion circles" with the other to encourage the canula to go in straight).

    We had to bite the bullet and accept the fact that Molly can only get two days out of an infusion set. We don't try to push it now and just change the darn thing out on a schedule. We've also learned how to get the bubbles out of the cartridges...but I'm sure we still get an underdose from time to time. There are far more details surrounding the pump and each person has to decide whether it's really worth it in the end. Seeing the pleasure on her face when she goes to the cupboard for a snack and whips out the pump has been a gift! Wouldn't trade it for the ease of MDI. In addition, we were dealing with morning highs on MDI and lost more lows in the afternoons. Those have disappeared totally!

    So, arm yourself with as much information as you can...watch youtube videos about site insertions and getting out bubbles...read Pumping Insulin for the 5th or 6th time (you get something new or something finally makes sense each new time!) Don't give up!!!!
     
  10. Mom2rh

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    This was our experience. Hang in there. You will wonder how you lived without the pump at some point.

    Don't be afraid to try other sites. Realize that getting the right combination of basals and boluses is just guesswork. And will need to be tweaked often. It's just part of making the pump work the best for you guys.

    There is a learning curve...but the rewards are great!
     
  11. Abbysmom

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    Have you tried arms?

    My daughter gets much better numbers when her infusion set is inserted in the back of her arm.

    Also, you may want to ask your endo about steel infusion sets they can be much more reliable for skinny kids or really young ones.
     
  12. NomadIvy

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    We're on week 7 and still making adjustments. CDE gave us a test asking how long it'll take to really start seeing BIG improvements in management after pump start. I think the choices were 1) a few days 2) 4 weeks 3) 1 month 4) 3 months (well, something like that).. I answered "3 months". It was the correct answer.
    There's a big learning curve. Plus - basal testing, etc. Hang in there.

    Reading The Pumping Insulin book and Think Like a Pancreas helped me a lot.

    Didn't your endo or CDE ask you to send in numbers every three days or so? There will be LOTS of tweaking.
     
  13. Mom of 3 BOYS

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    I feel your frustration!!!!:cwds: We have the angled sets and we have messed up while putting those on, (i think now we have the hang of it) we had a non working kinked site that shot us up to HI and we had moderate ketones (first time since dx in 08) we seem to have no pattern what so ever! And I feel that all the experience I thought I had is not so much and I am as clueless as I was in the hospital room the day I was leaving after dx...

    But everytime that I want to throw the pump out the door, I see the smile on my child's face evrytime he can eat without getting a shot... that he doesn't have to choose an extra shot or that cookie we didn't know about until after his shot...

    i think like everything it's hard now but it will be worth it at the end... (at least that is what i keep telling myself):cool:
     
  14. ReyJamie

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    Started pumping and really stressed!!!

    My daughter is 10 years old and has had diabetes since Oct of 2010. We just started pumping with animas and I am sooo stressed. Her numbers have been really high and I am getting NO sleep. The frequent 2 hour checks to make sure the basal is set correctly is horrible and I feel like we are starting all over again :(

    I feel like I am doing everything wrong. I just tested her at 2:30am and she was 231...I remembered the rep telling me I needed to correct with the ezBG...I did and gave her 1.3 U...Just after I gave it I realized that rep told me to give at 50%! Ugh I know I am being hard on myself but I just always worry so much and its hard to think properly when you are so tired.

    I hope this gets better soon. I have always heard about all the advantages of the pump but the stress and worry on top of being up all night for the last 2 nights if VERY hard.
     
  15. cdninct

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    The first days stink. I wanted to run the pump over with my car every day for the first month at least (for my husband, it was at least 6 weeks). I nearly put DS back to MDI on multiple occasions, but almost a year in, I couldn't imagine not having it. It can take a long time to get settings right (that's not something they put in the brochures!), and until they are, all of the checks and unpredictability can be frustrating. Hang in there--I can almost guarantee it will get better!
     
  16. DsMom

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    Where are you putting your son's pump sites? When we tried tummy for my son, he said they hurt. We have always done the butt/hip area, and are sticking to that for now. Also, there is a big selection of infusion sets, perhaps a new type would help. We started with straight insets for my son, and the insulin just did not absorb well because he is so thin. We use the slanted inset 30s now very successfully.

    Keep in close touch with your endo team and/or pump trainer. Your son's rates are surely set very conservatively right now for his own safety, and with constant tweaking (for a while), you will find the right rates and get him back in range. The pump itself is not to blame for these high numbers, and it is most likely not a bad pump site either (though it is always best to check them in case), just the rates that are not yet right for him. It takes time (and high numbers) to get there...but you will get there!

    Just like with MDI, this is a learning process. There is a lot of tweaking and learning involved....so take a breath and remind yourself you are learning and it will not be perfect at first. Personally, I find pumping to be the best thing we have ever done. It makes everything so much more flexible...and his control is much better now. Wait until you go to your first party:) (after his rates are better)....giving insulin at the touch of a button when he wants to eat rather than hauling out the insulin and syringe...it felt like Disney World to me!!;):D Ditto with eating out...it is so much more discrete with less fumbling around. There are so many advantages...try to remind yourself of that, too.

    It's only been a week. Hang in there and remember why you wanted to do this in the first place. These high numbers are temporary...the advantages will be permanent. Good luck.:)
     
  17. minniem

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    Just so you are aware, the OP posted this in January 2011...the thread is over a year old.:cwds:
     
  18. nanhsot

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    Another new pumper bumped it up actually, one having similar problems. But she also started a new thread, so hopefully is getting the support she needs.
     
  19. DsMom

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    Jeez...I keep responding to these old posts. Think I'd learn...:rolleyes::eek:
     
  20. Charliesmom

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    My goodness, I hated the pump for the first month. I think the first couple days were great for us, too. I think it was from the Lantus still in his system. The CDE was being very cautious about any changes but after a few days of him constantly being in the 300's I had enough. We started doing basal tests and with the CDE's help we got it straightened out. All of our problems were mainly from the morning basal being too low. My son needs 2-3 times as much basal in the morning as he does for the rest of the day/night. It was a nightmare for the first month but I am so glad we got him on the pump.
     

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