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Anyone Regretted Getting the Pump?

Discussion in 'Parents of Children with Type 1' started by justice1315, Jun 13, 2013.

  1. justice1315

    justice1315 Approved members

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    My daughter is 9 (soon will be 10). She has been doing shots for two years, and after a week at diabetes camp has decided that she wants to be on the pump. We have looked at a few, and what seems like the best option so far is the Ping. My question is..... are there any families that have transitioned from injections to the pump, only to find that you wished you would have stayed with shots because of problems/complications? I don't know a lot about the pumps, a rep is coming out to our house next week to educate the family a little more before any decisions are made. This decision keeps me up many nights, mostly because I am so scared of the unknowns with the pump. I have heard that they tend to go low at night on a pump.... worry about something happening to the pump/tubing at school when I'm not around... The same things every parent on here has probably obsessed about at one time or another.

    I just want to know and feel like we are making the right decision with getting rid of the pens and going to the pump...
     
  2. StacyMM

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    As you can see from my signature, my DD was on a pump temporarily. She is back on a pump but was quite happy on MDI. To be honest, she would still be happy on MDI - it's her preferred treatment method.

    When she was younger, the site changes were very traumatic for her. As time went on, it got worse and we told her that she could change back to shots when she turned 8, if she still wanted to. She turned 8 and announced, "No more pump." The transition back was relatively simple, which makes pumping less intimidating. We started up a long-acting insulin again, worked out the dosage over the first few weeks, and it was easy. Starting pumping and then changing your mind is not difficult so keep in mind that you can always change your mind.

    DD is pumping again, but she would never have switched if her brother had not been diagnosed. He immediately requested a pump and she didn't want him to have anything 'cooler' than she had so she got one, too. We were thrilled because she has serious dawn phenomenon and being able to adjust her basals for nighttime is fabulous...and saves us from getting up to do a Levermir shot a few hours before breakfast!

    There is a certain courage needed to start the pump. I know for us, it's hard to give up what we understand and know and feel we can control...but the benefits to us always made the jump worth it. Once it's figured out, I think most parents think, "Why didn't I do this sooner?!?" It's just scary to start over and have new diabetes worries again.
     
  3. Sarah Maddie's Mom

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    God, no. Not for an instant in over 8 years. My only regret is that we spent 2 years on shots. Three different brands and I would take even my least favorite of the three in a heartbeat over going back on injections.
     
  4. LoveMyHounds

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    Never! My DD and I love the pump since the very first day :).
     
  5. Sarah Maddie's Mom

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    Comments above in color
     
  6. ecs1516

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    No regrets, ever... Mine were 4 years and the other child was 23 months when going on the pump. This was 12 years ago. Even my 23 month old was thrilled ! No more shots he would say. No chasing him down to give a shot or having to give kids shots when out to eat.:cwds:
    Our pumps back then were not 'smart' pumps. You have to enter units of insulin. No carb wizards back then when we first got them. It was still such an improvement .
    Our A1C's improved, nighttime BGs improved.
    Can't imagine my teenagers, will all they eat, not being on pumps.
     
  7. Beach bum

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    I know what you mean about coming home from camp and wanting something. In our case it was the CGM. My daughters friend had one and it definitely is what sparked her interest.

    I will answer your questions in color. This is only my opinion from what we have experienced in the past 7 years of pumping...

    My daughter is 9 (soon will be 10). She has been doing shots for two years, and after a week at diabetes camp has decided that she wants to be on the pump. We have looked at a few, and what seems like the best option so far is the Ping.

    We are on the Ping right now and it works very well for us. Hands down the best feature is the remote, especially at night. But, it is a OneTouch product, so if you aren't a fan you can use something else, you will just have to manually enter stuff into the pump. My daughters insulin needs have increased with getting older and unfortunately they only offer a 200u cartridge which means in reality 187u of insulin can be put in. So, we are changing cartridges more. But, like all pumps it does what's most important. It delivers insulin.

    My question is..... are there any families that have transitioned from injections to the pump, only to find that you wished you would have stayed with shots because of problems/complications?
    Nope. For us it was life changing. My daughter was only 4, so it was great for decreasing insulin when needed, bolusing for a grazing kid. We do go off the pump in the summer because we live at the beach and it is just easier, but also to give my daughter a break from being attached 24x7 (it's called untethered, another story for another post). But, by the time summer is over, she is more than ready to go back to pumping!
    As for problems/complications, they have been few. You may occasionally get what is called a bad set. You can usually figure this out by the 3rd blood sugar reading when the BG's keep going up and not down. This is usually because of a kink and if it's an occlusion, the pump will alarm (had our first in 7 years last month. It was because of something I did). Pumps will break for various reasons (look at it this way, it's being used 24x7), but the pump companies are very good about replacing ASAP. We've had a few replacements over the years. Most important, we've never had an issue from the pump that has put my daughter in the hospital.


    I don't know a lot about the pumps, a rep is coming out to our house next week to educate the family a little more before any decisions are made.
    That is great. You will get to play with it, feel it, have your daughter look at it. Remember, it is a salesperson so they are trying to sell you their product. Of course, they will say theirs is the best:rolleyes: Don't feel pressured by this. Remember, you will have this for 4-5 years, so sleep on it.

    This decision keeps me up many nights, mostly because I am so scared of the unknowns with the pump.
    I won't lie, there is a learning curve, but between training (Animas did it right in our home) and online tutorials and coming here, it gets easier every day. The first few weeks might be a bit bumpy, but IMO, the benefits outweigh the negatives.

    I have heard that they tend to go low at night on a pump
    As for going low at night, she can just as easily go low on MDI as on a pump. You need to just get up and check her, especially if she's been active. The beauty of the pump is that you think she's going low or is low, you can reduce the amount of insulin she's getting. So, for example on nights where my daughter dances, we reduce her insulin by 30% for about 3 hours.



    .... worry about something happening to the pump/tubing at school when I'm not around...
    My daughter has worn one since she was 4 years old. She has skied, done gymnastics, danced, done PE, hiked a mountain. She and the tubing came out of it unscathed. LOL, the one time it did get ripped out was by me and I somehow managed to get her and her tubing stuck in the silverware draw!:eek: My daughter wears her pump in a pack and wraps the tubing a bit around the pump and tucks it in. Other times if it's on her arm, the tubing snakes up her shirt, pump is in the pack. If she wears it in her pocket, she just shoves the tubing in there.


    The same things every parent on here has probably obsessed about at one time or another.
    I understand your fears, we all have them...still.

    I just want to know and feel like we are making the right decision with getting rid of the pens and going to the pump...

    I think once you talk to the pump reps and touch one you will probably feel a bit better about it. This isn't a decision to make lightly, so do some research, talk to the reps and figure out what is best for your family. I remember being petrified, wanting to cancel the whole thing, but I knew deep down we had nothing to loose (you can always send the pump back) but some $$. In the end, the good outweighed the bad and we haven't looked back since.
     
  8. miss_behave

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    The only thing I regret is not getting one sooner :)
     
  9. nanhsot

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    No regrets, no, but realize you will have a big transition time that can be difficult as you figure out proper basal settings. It's not a 1-1 translation, the needed basal via pump is different and night times especially can be tricky to figure out.

    The other thing to remember is that you can always take a pump break and go back on mdi. When we got the pump my son wasn't really interested, but our endo encouraged us to just order it, even if it sat in the box on the shelf, at least we had options. As it turns out, he tried it and loved it, but MDI is still an option at any time.
     
  10. Lee

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    NONE!!! The great thing about a pump is it isn't permanent. If it does not work for you, you can very easily go back on MDI or some mixture of it.
     
  11. Kaylee's Mom

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    Kaylee has been on the pump for over 4 years ... I love the pump. We had Animas and just switched to the Minimed. I loved the Animas and the infusion sets .. and like everyone said you can always go back to the pen .. even for a short time if you wish to take a break .. it is whatever works for you! :)

    Crystal
     
  12. Debdebdebby13

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    We love pumping and it's made life so much easier. No more multiple shots if she decides to eat more. Her a1c has stayed more or less the same though, it was 6.7 before pumping, the first quarter after pump start she was 6.3, which was almost too low for our endo and then back in January she was up to 6.8, so, just about the same as before.

    On a side note, we live in OKC and DD has been at diabetes camp this week as well, I wonder if we are at the same camp??
     
  13. SandiT

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    We're in process of getting a pump right now. I completely hear you on all of the fears. When I heard about people dying at night when their pump malfunctioned and just... kept... delivering... I was all :eek: and since that's my deepest fear around all of this anyway, you can just imagine how that went over. It felt like my heart had been ripped from my chest, it scared me so much.

    But I went in search of real, hard data. The chances of this happening are less than the chances of her having to have her tonsils removed and dying during the surgery. Which means the chance is astronomically low.

    That being said, it's a realistic fear, and shouldn't be treated like paranoia. Personally, I have gotten used to getting up at 3 am every single night, because even without the pump, I can't shake the fear of her dying at night. It's just something that I do for my child, because for me, it's what it takes to live with this. If I didn't feel prepared to do this, I wouldn't be willing to get the pump, because for me personally, the fear is too great.

    Last night, on MDI, my daughter was 123 at 11 pm. That sounds great on the surface, and my husband was happy with it. But my daughter drops on average 100 points at night between midnight and 8 am. So starting out at 11 pm at 123 was actually NOT good.

    My point being that this is just diabetes, pump or no pump.

    I have talked recently with 2 families who are new to the pump and struggling with it enough to bring them to tears. So there are multitudes who don't regret it and feel it is the best thing ever, but that isn't everyone in the entire world. And people HAVE died from pump malfunctions. But people have died from other complications with diabetes, too... and sadly, that's just the reality of what we're dealing with here. You can only do your best, whether on or off the pump, to minimize the dangers. You learn the risk factors and you knuckle down and do what you have to do, whether it's getting up at midnight, then 3 am, and if she's low at 3, then again at 5, and again at 8, or whatever.

    From what I've read, the pump doesn't really increase the danger level of this condition... but again, I'm in the same process of deciding and getting, so as I'm sure many people will be pleased to screech, I am not speaking from a place of having a pump, only from a place of going crazy reading and evaluating and studying statistics (piss-poor as they are, sorry to say).

    Really discuss your fears honestly with your endo, or (personally, better yet) with your diabetes nurse educator. In my experience, the nurse educator seems to be more directly and personally in tune with parental fears and direct experiences.

    There are a few people out there who did not feel great about the pump for various reasons. Some of those reasons I was able to shrug off as "that wouldn't bother me." Some of those reasons cause me significant fear. Talk your fears out honestly with someone in person, because I think it's important to have your concerns recognized and validated and then have assistance in alleviating them.

    If you're like me, some may simply not go away. "It could happen" seems to be enough for me with some fears (particularly those that include death as the outcome).

    But there are proactive things that you can do that minimize the danger, and the danger still exists even without the pump just with different causes. If only we could do away with all the unpredictable factors of diabetes, what a relief it would be!

    I get your fears. I'm in them with you. I understand that not everyone experiences this when trying to decide to pump or not to pump, and that's okay. But for those of us who do, it's a big deal, and please don't let anyone tell you that it's not okay to feel what you feel.

    I chose to go ahead with getting my daughter a pump, because I am willing and ready to do what is required to make myself feel 'mostly okay' around the fear of her dying in the night and like I am doing my best to alleviate it. It's nothing I don't do now, and she's not on the pump and could still die from an unexpected low. That isn't going to change, and from what I've been able to tell, more unexpected night-time deaths happen simply from whatever unpredictable factor it is that causes it regardless of insulin dosing method, than do from pump malfunctions.

    I weighed her emotional need to be more free to eat when and what she wanted, and to have her insulin dosing be less intrusive into her life, against my fears. A happy life is a life worth living, and at the end of the day, however long life gives us with its unpredictable and capricious nature... I'd like her life to be a happy one. She could be hit by a bus, fall out of a tree just right, or a million other ways be taken from our lives unexpectedly. So while she's here, I'm going to do what I can to make her life a happy one and one that she doesn't look back on with "I wish I had..." regrets.

    If I'm going to tell her not to let diabetes stop her from being happy, I have to walk that talk. I can't let her diabetes stop me from doing the best I can to help her be happy, either.

    That being said, if it turns out that she isn't happier with the pump, we'll go back. Nothing says that if you choose the pump, you have to stick with it forever. It's a lot of money, yes, but ultimately the most important factor is the health and happiness of the CWD.
     
  14. nebby3

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    I never regretted the pump but my dd chose to go back to MdI because she didn't like wearing something. I have never heard that lows at night happen on the pump. If anything it should give you better control because you can adjust the basal. Highs from a bad site are more of a danger. The thing I miss most about the pump is temporary basals, esp. during illnesses. My dd's control is as good on MDI as it ever was on the pump so it is her choice but I would still use it if I had a choice.
     
  15. Jacob'sDad

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    No regrets, but there are a couple of drawbacks I can think of to using the pump.

    1) Basal insulin is delivered through the same site as bolus insulin. What this means is that whenever there is insulin on board, there is no longer really basal. Basal is being added to the same pool as the bolus insulin and it is all absorbed as one thing. Others may argue that this really doesn't matter but I personally think it does.

    2) Adsorption can drop off the longer a pump site is in and can sometimes be dramatic. Sites can come loose and not be noticed, which means no insulin at all. Pump failure, while rare can occur. These things also affect basal because it is being delivered through the pump.

    In regards to basal, both 1 and 2 above can be avoided by only using the pump for bolus and still using injections for basal. Not too many folks do that but some do. Doing this, though, loses the pump's ability to use multiple basal patterns. Some have even worked around that issue by doing a portion of the basal through the pump and also giving a basal injection.

    There's much more that could be discussed and I am probably getting unnecessarily detailed here when all you asked was a simple question.

    The simple answer is NO We have never regretted using the pump and would not switch back.
     
  16. nanhsot

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    Have you considered getting a CGM? The level of fear you have might be alleviated by having that technology, the predictive information you get and the ability to see trends more easily might be helpful to you.

    If I were living with the level of worry you currently have, I'd be pursuing a CGM before a pump, or better yet, both.

    You might also research the current safeguards of the major pumps out there. There are now technologies that would stop the pump from emptying itself, for example, it's simply not possible. You can also limit in the settings the bolus size, so your child can't accidentally overdo it, for example. The ability to fine tune basals at night is one of the bigger advantages to pumping, and the ability to turn basals OFF is as well. So if you have a child on lantus going low, you have to keep feeding because your basal is there whether you want it or not. On pump you can turn basal off fully. So while I understand the fears, we all worry, the pump in and of itself absolutely does not increase night time lows.

    As far as the people you know who are new and struggling, that's normal, pump transition is difficult.
     
    Last edited: Jun 14, 2013
  17. hawkeyegirl

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    Really, again you are projecting your own excessive anxiety and fears onto someone else, and probably scaring the living crap out of them in the process. The OP didn't say anything about fear of the pump KILLING her kid, but you go on and on about it. I honestly don't know what you're thinking when you post stuff like this. I'd also note that you managed to write a book-length post responding to her question asking whether anyone regrets getting a pump when you don't even actually have a pump yet. It really is okay not to respond to every thread, especially when you don't have any relevant experience with what the OP is asking.

    Regardless, if you are truly that fearful of the pump killing your child, I'd strongly suggest that you look at the tslim. Its design is such that it is actually impossible for it to discharge the entire cartridge of insulin into your child. I believe it is currently the only pump out there with this design.

    To the OP, no. We have not regretted the pump for a single moment. Best diabetes decision we have made. And if you look at studies, you'll see that kids who pump actually have lower rates of nighttime hypoglycemia than kids on MDI. :)
     
    Last edited: Jun 14, 2013
  18. justice1315

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    Thank you for all of your replys, lots of great information!!! Like all of you have said, she can go back to injections if this doesn't work out, so that does make me feel a litte better. However, someone posted that there have been deaths from the pump dispersing too much insulin at night??!!!!!! I had never heard that!! Looks like will be doing LOTS of research before we make this big decision...

    Thanks again for the info!
     
  19. tammy82

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    No way! My daughter loves to eat constantly and this wouldn't be possible if she didn't have the pump. Before we got the pump it broke my heart to give her so many shots as she was so young at the time. 3 months of doing shots was enough. 1 site change every two days compared to many many shots daily.
     
  20. danismom79

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    Never regretted it! I have thought on occasion that we had some easier times with NPH, and my daughter has said that she may entertain taking a break at some point, but she's happy to be free of daily injections.
     

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