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Help me understand

Discussion in 'Parents of Children with Type 1' started by jenm999, May 15, 2014.

  1. sszyszkiewicz

    sszyszkiewicz Approved members

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    I find that to be true as well. Well meaning friends/family members ask about a pump all the time. I think they inwardly believe it equates to a simple solution to relieve suffering/fix the problem. So they ask about a pump as a way (I think) to sympathize with the situation.
     
  2. jenm999

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    My FIL thought the pump did what the bionic pancreas does - I wish!
     
  3. susanlindstrom16

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    We did MDI for a year and a half before switching to the pump. It honestly did make life easier in the ways that others have mentioned, such as being able to dose for additional snacks, variable basal rates, etc. But the good thing about it is that there is no rush, if you guys are happy with how things are going, its not like you have to decide right now.

    I was also worried about having something attached to her at all times. She has not once complained about that and in fact, it seems to me like she hardly notices it when she is running around like a maniac.
     
  4. quiltinmom

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    Everything I am about to write has probably already been written, but I want to chime in anyway.

    For us it was independence and convenience. Ds was diagnosed at age 7. We started pumping when he was nine.

    We didn't take a vial of insulin everywhere by default, so if we wanted to stop for a spontaneous ice cream cone, we either couldn't, or we would let him eat it and hurry home for a shot (not ideal). Always having to carry everything and find a cool place to keep his insulin....a pain. Plus, as they start growing like no tomorrow, they start eating like no tomorrow, and 3-4 shots a day turns into 5-8 shots. I think he boluses for food on avg. 6-8 times a day. Not to mention highs.

    Also, when they are six they don't go many places without you, but as they get older they start going more places, like field trips, friends houses, etc. it is simpler to care for d with a pump instead of mdi. If my Ds were on shots he would have to go to the office every day, maybe several times. As it is, he only has to go there when he is in trouble. :) He is 12 and does much of his d care on his own, and is able to in part because he pumps (and he wants to).


    His a1c went down the first appt. after pump start. You may not need to nudge done a 140, but what about a 215? Would you give an independent shot for a number like that? Or would you wait until he was over 250? Just something to think about.


    On the other hand, some people live full, happy lives on mdi. They can't afford it or don't want it or whatever. Pumping is adored by many, but it isn't for everyone. Some would rather cgm than pump. I can't say, as I haven't ever used cgm.

    My advice is to do what works until it stops working, then look for solutions when it comes time. I would not try to push him into pumping. He is only six, and sometimes you have to make the adult decisions, but it is his diabetes, and he should have a say, IMO.

    Hope this helps.
     
  5. sincity2003

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    My DS was on MDI for about 9 months. He said he didn't want a pump, as he didn't want anything attached to him. In June of last year, 5 months after diagnosis, he went to a summer D camp and was one of only 3 campers not on a pump. When I picked him up a week later, his first words were not I missed you; they were, I want a pump. We then began the process of getting him one.
    I say that to warn you that if your child is saying right now they don't want one, be prepared for that to change at any time. And while he loves his pump now, when we had to go back to MDI over spring break to clear up some skin issues, that didn't seem to bother him either, but he did say he didn't want to go back on MDI permanently.
     
  6. glko

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    I am mom to a son dxd 9months ago who started on a pump ASAP even though he had great control and is still in strong honeymoon, and also wife to man who has been on pumps twice but hated every day pumping so now does MDI. I can see both sides of the coin. I agree with posters who say if you are happy, your son is happy and control is good then give thanks for that and let it ride. People can and do have excellent diabetes control on MDI, pumps are a tool not a cure for diabetes. Lots of people on pumps have crappy control, my dh's A1c was higher on a pump than on MDI.
    By respecting your son's wishes and giving him time to process and have a voice in his diabetes care you are setting an example that his diabetes belongs to him and he does have some power over it. My ds HATED shots and avoidance of those motivated him. Since he is on low doses of insulin the ability to improve his control with doses as low as 0.1unit boluses and to adapt quickly since he is very into soccer motivated us. For ds it has been overall positive but is certainly not a cure and is not as great as not having diabetes. There are bad sites where we are changing things out at 11pm or doing multiple site changes a day, panic attacks when he left the pump on the ledge of the garage and got on the bus ending up at school with no pump, alarms that go off at school and embarrass him, and he still has highs and lows though not as often as before pumping. But when I ask him if he would like to go back to MDI I consistently get a "No way!".
    I also do have to agree with Wilf that unless you and your son are committed to pumping and think that it will give you advantages such as better control or quality of life it is not a good use of resources to "try it". Pumps are expensive tools, costing as much as a decent used car. With our limited health care dollars think about it, research it, talk about it A LOT before you ask insurance to pay for it. And if your son is not interested then I would wait until he is ready before forcing it upon him.
     
  7. rgcainmd

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    My daughter, who was not diagnosed all that long ago, was probably feeling the same as your daughter is now at the same point in time post-dx. I, on the other hand, was extremely pump-focused from the starting gate because I had at least a rudimentary knowledge prior to my daughter's dx about what pumps can and cannot do because I have one patient on a pump (not rx'd by me; I'm not an endo) and she was kind enough to show it to me and explain how it worked. Shortly after dx, we were also very frustrated by the inability to stay within range despite "following the rules." I think that it's human nature to desire and expect "good" results when you are carb counting accurately and using insulin as instructed to correct highs and bolus for meals. How can you not feel like something is very wrong when you are doing everything right and the numbers still suck a lot of the time?

    My daughter was also not thrilled about the idea of having something attached to her body to "fix" something that was not her fault in the first place. But a short time after it truly sank in that T1D was not going away (she knew this on an intellectual level from the get-go), she desperately wanted to take back some of the control over the intimate functioning of her own body that T1D had stolen from her. MDIs did not serve that purpose for my daughter. In her eyes, all injections did (besides the vitally important job of keeping her alive and sometimes keeping her glucose levels within a wide range) were dictate that she needed to eat everything on her plate or she'd have to drink juice when her tummy was already full, or prohibit her from grazing unless she ate "free" foods (what exactly is "freeing" about having your food choices limited?), or have to take even more injections to eat what she wanted when she wanted. Another parent eloquently phrased my concerns about how the unfortunate need for insulin via MDIs was negatively impacting my daughter's ability to listen and respond to the messages her body was giving her regarding hunger and satiety. This wise parent said that for some people pumping "facilitates a more normal relationship with food." It was this particular advantage of pumping that led my daughter to view choosing to pump as the best way available to regain her control over a necessary and enjoyable activity (eating).

    As it turned out (due to circumstances beyond our control, not the least of which were our diabetes treatment team) my daughter acquired a Dexcom CGM a little over two weeks ago (before her scheduled pump start next month). I believe that CGMing before pumping is turning out to be exactly the right thing for my daughter. Wearing the Dexcom 24/7 has given my daughter the ability to at least fairly accurately see what insulin and her remaining Beta cells are doing inside her body whenever she chooses without the rigmarole of taking out her meter and strips and lancet and causing herself to bleed in front of others who may not understand what she is doing. Yes, a CGM does not eliminate the need to do fingersticks, but for my daughter it eliminates the need to prick her finger every single time she wants an idea of where her blood glucose level is. (Not to mention the invaluable and incredible ability to see in which direction her BG is heading!). I digress. The point I'm trying to make is that my daughter's choice to wear a CGM has not only enabled her to regain some control, but has given her an opportunity to experience "attached technology" as an inconvenience with a much larger reward. I believe this positive experience with her CGM is (hopefully) paving the way for my daughter to have more realistic expectations regarding pumping. I think she has a better understanding of the fact that "there are no free lunches" meaning that the "price" she will have to pay for being able to have "a more normal relationship with food" is something she is willing to fit into her budget, so to speak. Whether this will actually be the case is yet to be seen.

    My intent is not to pressure you into talking your daughter into pumping (or even considering a pump) when she is clearly at a point in time where she finds the idea abhorrent. Like the other parents, I just want to add a bit to your growing knowledge of all things T1D so that you are as well-equipped as possible to help your daughter decide how best to manage her T1D.
     
  8. andiej

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    We have been pumping for 3 weeks now. My son only diagnosed in December. He is 10. At first he hated injections, then he didn't mind them just before we got the pump. However he'd still prefer to change his pod every 3 days than be restricted to 15 carb snacks and 3 square meals a day. He hated going out for dinner and having to go to the toilets to inject. He hated that he couldn't snack. We didn't move to the pump for the control aspect as he was and still is honeymooning. His first HBA1C was 6.3 so we had no worries there. What we wanted to improve was quality of life. His comment on day 2 of pumping " mum it's almost like I don't have diabetes any more" tells me we made the right decision. The bolus wizard is amazing and makes bolus prep much quicker, count the carbs and it does the calculations for you. Jack really didn't like the idea of a tube, so we chose the Omnipod which doesn't show under his clothes. So in answer to your question I guess the main advantage is we are no longer restricted to a diabetes eating plan and he can now eat more often and more of what he wants to eat. This was demonstrated on our recent caravan weekend. Normally when we go away in it the first thing he would do is cycle to get an ice cream. With MDI he would have chosen not to have the ice cream as he wouldn't want another injection, however on the pump he carried on as he always had got his ice cream, pulled the handset out of his pocket and bolused. Pumping isn't for anyone but we certainly wouldn't give ours back.
     
  9. Annapolis Mom

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    I'm not sure if anyone's addressed this, but you do not have to change your range just because you're on the pump.
     
  10. MomofSweetOne

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    Because we've told you all the positives of pumping (which are true), I'll also tell you some negatives:

    At 3:30 this morning, my daughter's CGM alarmed because her BG had gone up 80 points. I typed in the BG to give her a correction dose, and as the pod began screaming, the PDM announced a system error. I had to call the company, reset the PDM, change the pod....and then the worst thing of all is that the Omnipod has this annoying "Check BG after a pod change" reminder alarm 1.5 hours after a new pod is started that can't be turned off even though I know my daughter is already being monitored by CGM and we don't need said alarm (yes, I complain to customer service about it every time I'm facing ANOTHER night awakening due to a nighttime pod failure). And I had no way of knowing how much of the correction dose had been given, plus the Bolus Calculator now is on vacation for the next four hours due to the system failure, so I don't know how much IOB, if any, she has while I'm having to do the math myself again. I was glad for the CGM that would catch any overshot in dosing!!

    By the time I'd done all the above, I was fully awake and had dozed off for less than 30 minutes when the reminder alarm went. There are times those of us with kids on pumps would fully like to run the system over with a car. :wink:
     
  11. nanhsot

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    I simply feel a need to comment that this may be a specific pump problem to the omnipod. None of the things listed above are any that we've had to deal with in any shape form or fashion. Not on Animas Ping and not on Tslim.

    We've had a site rip out in the middle of the night, either does a quick site change or wakes up high and corrects.
     
  12. cdninct

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    I agree with nanhsot. We've never had anything like that happen with the Medtronic pump, either!
     
  13. Megnyc

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    Yes. I have had pods fail in the middle of the night while doing a correction bolus and it is inevitably a huge hassle. But if for whatever reason I need to do a medtronic site change in the middle of the night it is no big deal and there is no such thing as the issue with losing bolus calculations and IOB. I actually keep sure ts (steel sets) around for middle of the night changes so I can go back to sleep and be 100% sure they will work!
     
  14. kail

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    My daughter was diagnosed 5 months ago, almost 6 now at just over 3 years of age. I ask myself this same question almost daily. We are on MDI humalog and lantus so 4 total shots a day. Our endocrinologist is not a big pump user and so I am constantly questioning if I should be pushing more for a pump as he is not going to be in a hurry to offer. The biggest reasons I want it is that it is hard to dose her. Our ratio is about .5unit for 30 carbs and sometimes she doesn't eat 30 carbs so she gets nothing as I can not give her .25 unit accurately enough (though I will give .75 units or at least try). Sometimes I am giving her more food that either of us really want just because I want to give her some insulin. She typically gets .5 units 2-3 times a day though sometimes none or just once plus 1 unit of lantus at night. We don't dose for snacks and just try to keep them smallish which is also often a challenge with a 3 year old. Our first lab tests post diagnosis at 4 months in had an average of around 130 if I remember right and A1C 7.2. For her age the doctor was pleased and doesn't want us to push lower as we also have low blood sugars about every other day usually 45-60 though maybe less lately. I know though that she often is spiking high post meals and then her own body brings it back down before the next meal or the morning as we are still in honeymoon. I worry that it is putting more strain on her pancreas which I would like to rest so I spend alot of time wondering if we need a pump. On the flip side, it is very important to me that my 3 year old does not feel that she has an illness. I worry that a pump is a constant reminder of something I don't want her to focus on at this age. Perhaps though the biggest reason I don't push is because I gather that I will only get a pump approved every 5 years and it seems like there might be something better coming in the next couple years. Her doctor isnt in a hurry for us to get a pump but does admit that the Minimed enlight that shuts off the basal when the blood sugar goes low would be the pump that would be worth considering at some point. Yet everything I read suggests the dexcom CGM is better and I would kill for a remotely viewed CGM. But there is no point even pushing for that right now if we are going to end up on minimed enlight at some point.
    I don't know what to think and so we just keep doing what we are doing.
     
  15. Sarah Maddie's Mom

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    Sounds like her need for small doses makes her a perfect candidate for a pump. And I think you are right that your current regimen is putting something of a strain on her pancreas, if her A1c is 7.3 then she's spending a fair amount of time over 130.

    In hindsight, we waited too long to put our kid on a pump because DH feared it would be a reminder, to her and to the world, of her D. Well, nothing says, " hey world! I have diabetes!" like a syringe and a vial of insulin at the birthday party or pre-school picnic :wink:

    Not picking a pump because there might be something better coming down the line is not a great reason to wait - the pump companies have been promising integration with cgm for years - MM has it and for a lot of people it's a pretty underwhelming system. Personally, for a 3 year old girl I'd go Dexcom and Ping for the remote bolus capability even though we prefer the MM 723 for the 300u cartridge.

    Keep reading on the forum, or start a new thread if you wish to get more feedback.

    Good luck.
     
    Last edited: May 19, 2014
  16. ksartain

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    I appreciate the Check BG 1.5 hour later feature. It lets me know the pod is working correctly.
     
  17. Melissata

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    My daughter has used several pumps over the years, and is VERY happy going back to a tubed pump and leaving the Omnipod and all of it's issues behind. Using the steel needle sets along with the tSlim has been awesome for her. I liked the idea of no tubing, but I must say that I trust this pump and infusion much more than I ever was able to trust the Omnipod in almost 5 years of use. She has a full box of pods left but I know that she will not want to use them, except for back up if something happens to the tSlim. I hadn't realized how much I disliked never knowing when the pod was going to act up. That is why I urge everyone to pick a tubed pump for insurance to pay for, and then do the Omnipod Cut the Cord. It is not a simple thing to get insurance to pay for a second pump if you have problems or just don't like it, even though the Omnipod start up cost is far less then a tubed pump.
     
  18. Snowflake

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    Man, I could have written this post myself 2 years ago, in the months just after my daughter's diagnosis at age 2.

    Our endo at the time told us not to hurry to pump, that "the road is long" or some-such platitude. She wanted us to spend some time adjusting to T1, and was also concerned that we had too many other non-diabetes stressors to initiate pumping (infant baby brother, impending interstate move). I'm glad that we didn't listen to her, and pushed to start as soon as possible, which ended up being 6 months post-diagnosis because we were in an extremely oversubscribed big-city endo practice with very limited pump-start class spots.

    Fwiw, our new endo's philosophy is that toddlers and preschoolers should not pass go, and should start pumping immediately because the tiny dosing on pumps just works better for that population.

    A 7.2 A1C is impressive for a 3 yr old; we never got close to that on MDI. If we had, I'm not sure that we would have been as eager to pump. But you've hit the nail on the head that the difficulty of MDI in very small children is the limitations of the carb ratios. We had meals where it was amazingly difficult to convince our daughter to increase what she was willing to eat from 15 to 25 carbs, at which point we could dose her (an extra few bites of pasta could take 15 minutes!); we knew if she stayed at 15 carbs with no insulin, her bg would shoot up, but if we dosed her at 15, she would go low.

    Also, to your point about the psychological aspects of wearing a pump, that has not been an issue for my daughter, although every kid is unique and your child might have a different mental makeup. She just thinks her pump and CGM part of her, and so do her classmates. She's told us that she doesn't want to go back to shots, but I actually suspect that if we were forced to, she would adjust pretty quickly to that as well.
     
  19. jenm999

    jenm999 Approved members

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    You guys are awesome. Thank you again for all these insights. I'm sharing with my son and husband as we discuss whether (or really, when) to move forward.
     
  20. MomofSweetOne

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    I completely agree with you. The hassles with the pods are so much greater than for the other pumps, but it is convenient for summer time with so much activity.

    Like the other posters, we haven't had problems like with the pod with our Medtronic, though we did have one fail in a big way. It alarmed No Delivery. Upon further inspection, it had insulin in the reservoir area and an o-ring poking up through where the piston comes through. That was before we cut-the-cord, and one of the reasons I do like having a back-up pump. My daughter's TDD that week had varied from 15 units to 65 units, and I wasn't comfortable injecting Lantus that couldn't be temp basaled down.
     

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