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Why I Am Nervous/hesitant About The Pump

Discussion in 'Parents of Children with Type 1' started by sszyszkiewicz, Jul 22, 2015.

  1. sszyszkiewicz

    sszyszkiewicz Approved members

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    So my DS. my wife and I attended what I call the Pumps 101 class at CHOP. DS wants a pump and we are taking active steps to get it, but I was, and remain, nervous about the pump.So I wanted to share what i am thinking/feeling.

    Regardless of my feelings, he is going to get the pump simply because he believes it will improve how he feels and manages T1D. Right now, he is tired of shots, and one set every three days is better than 7 jabs a day with a pen in his mind, and I fully realize that his experience/mindset/opinion matters far more than mine. My job is to get him to adulthood in as best shape possible spiritual/physical/emotional. So whatever that takes.

    Remember, prior to DS's diagnosis 20 months ago, we had no experience with T1D at all. Nobody on either side of the family ever had it. Also, at diagnosis time my DS was very very sick. So lets just say I have a healthy amount of respect for T1D and what it can do if trifled with.

    Remember also that our T1D journey started with an 11 year old, not an 11 month old. So I am living in a world where dosing to the unit or 1/2 unit is sufficiently accurate for the size of the person/problem. I dont need to worry about tenths of units or hundreths of units. I dont have to think about giving a shot to a 1 year old several times a day.

    So here are my reasons for hesitation/nervousness.

    1) Change for no improvement. On MDi with a motivated/dedicated/smart kid, with the benefit of a CGM, and getting around the learning curve as fast as we could, we are having terrific success against T1D. At his last appointment his 90 day average glucose was 129. He was less than 50 less than 1% of the time. His A1C was 5.7. he has grown like six inches since diagnosis, is eating us out of house and home, and is at least 6 months into puberty. He is on 20 units of lantus and our TDD is north of 45 units most days. We are not going to get any better number s with the pump. In fact his numbers will get worse as we come up to speed on the pump. It took us a while to figure out MDI. We have to go through the learning curve again and hopefully be in the same position we are now.

    2) I get the feeling that in 2 years the technology and standard of care are going to be radically different than today. he wants a tslim and its clear that we will be locked into that pump for 4 years regardless of what comes next. I am thinking about artificial/bionic pancreas technology. So if we switch now, we may lock ourselves out of better tech just down the road. I am guessing this is the first time in T1D history where this is actually a concern.

    3) pump drama/trust. This set. that set. this site. that site. absorption issues. mecahnical issues. Life on MDI, for the caregiver, seems very simple compared to pumps. Keep the unused insulin in the fridge, have a box of pen needles available, rotate, count to 5 after an injection.....and the insulin is unquestionably in with no ifs ands or buts. I never have to ask myself "did that insulin go in?" I personally watch the lantus shot each night (after a year of administering it) because of how important it is. We have never, ever, missed a Lantus dose since diagnosis. We have never had more than slight ketones since diagnosis.

    4) Numbers. Just because the pump allows you to adjust basals for every hour doesnt mean you can do that accurately or what you pick will be different tomorrow. Its bad enough the numbers swirling around in my head with the *simplification* that I can only set a basal once per day.

    5) Site preservation: If he starts the pump now and starts using body locations, will sites become harder to find when he is 30 when the tech will presumably be better? Put another way, by using his body to host these sites today, will it preclude use of better tech tomorrow?

    So again, DS gets to pick. I will do whatever it takes to keep his head in the game and remain motivated, but these are the things on my mind. I am not looking to start an MDI vs pump flame war. These are just the things going through my 20 month into this diagnosis head.

    So I am off to pick DS up from theatre camp. The Share says 325. His basal needs to go up. thats with a zero carb breakfast (he had eggs in a rush out the door to get to camp), and DESPITE a unit as he started his day at 150. I can tell you one thing, whenever this pump starts, his basal numbers between 8am and 12 noon will be alot higher than those between 1am and 6am.
     
  2. hawkeyegirl

    hawkeyegirl Approved members

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    Well, first off, I'd think you were a little nuts if you WEREN'T a little nervous about starting the pump. There is definitely a learning curve, and a decent chance that numbers will be all over the place as you adjust. No one in their right mind would look forward to that!

    With respect to your specific concerns....

    1. You are correct that you are probably not going to have better numbers on the pump. However, it does make it easier to deal with some situations, and in my opinion, it's generally much more convenient and discreet than MDI.

    2. Since my son was diagnosed 8 years ago and started pumping over 7 years ago, people have been fretting about what new technology will be out in the four years after they choose a pump. Seriously. And the general consensus on here has always been that if you wait for the next great thing to come out...you'll never get a pump, because there will always be a next great thing. I am reasonably confident in saying that there is not going to be a true AP to market within the warranty period of your t:slim. I think it's likely that Medtronic's pump with the auto shut-off for predicted lows will be out by then, but that's nothing close to Damiano's AP, which is what I think you're talking about. Furthermore, if something REALLY novel and different comes out, you (1) have the option of trying to get insurance to pay for it, because it's so great and new and different; and (2) companies often offer upgrade deals to in-warranty pumpers, because they want to get you switched over to their product. I wouldn't let this bother you at all.

    3. This is something that is real, but with time you learn to troubleshoot very effectively. I'm not saying there are never site issues, but for us, they are extremely rare. We've never had a mechanical issue that affected insulin delivery. My son has been on the pump for 7+ years, and I think he's had moderate ketones once, when he was sick. Pumpers actually have lower rates of DKA than MDIers.

    4. Yes, it is more complicated. No doubt about it. But you can fine-tune things so much better. You're enough of a numbers-cruncher that you're going to love setting different basal rates. And don't get me started on temp basals. So handy in so many situations.

    5. With good site rotation, it should not be an issue.

    So, in sum, kudos to you for pushing outside of your comfort zone in order to accommodate your son's wishes. There may be an initial period of frustration and adjustment, but I think even during that time, both you and your son will find advantages that you hadn't even really considered. Good luck, and keep us posted on how it goes!
     
  3. Lisa - Aidan's mom

    Lisa - Aidan's mom Approved members

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    Good luck with your son's decision. You've done so well with MDI and I'm sure you will do great with pumping too. My DS is against it and our CDE has stopped asking him about it since we manage well on MDI.
     
  4. rgcainmd

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    Thanks for being so forthcoming and sharing your concerns!

    I think hawkeyegirl addressed your concerns succinctly and accurately. And I think she's absolutely right when she says that you're a "numbers-cruncher" kind of guy and that part of you will likely end up loving the pump. Even though it can feel like everything goes to hell in a handbasket right after you start pumping, for us at least, it was worth it in the longer run. I have a feeling you and your son will excel at pumping.
     
  5. Christopher

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    I had/have some of the same concerns as you. And I think hawkeyegirl and rgcainmd have written some great thoughts. After 7+ years of MDI and no CGM, Danielle has finally decided she wants to do both at once. And like you, regardless of my own feelings and anxiety, I am totally supporting my child with whatever decisions she makes. We have the CGM up and running now and it is amazing. The pump is next and I am both excited and nervous. Just wanted you to know that there were others out there in the same boat.
    Keep rowing!
     
  6. MomofSweetOne

    MomofSweetOne Approved members

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    I was really nervous about switching to the pump, but now I'd hate to return to MDI. Temp basals, different basal rates, etc. are great. The learning curve was steep initially, but our team started us out on one basal for 24 hours just like on MDI and then began adjusting it. I'd do the same thing again. The best advice I can give is to stay in contact with your team if your child is running high or low rather than waiting until the specified day to call back.

    We used the Silhouette sites for the first year on the advice of our pump rep and hospital team. I wished we'd asked for samples and tried all the different sets. The Silhouettes did lots of tissue damage, and she has lots of tiny scars from that year. We then tried Mios until we got fed up with kinks. We're happy with Sure-Ts, other than the 6 times the tubing has completely come loose from the connector during the night.:frown: Without cgm, those nights could have been bad, but we caught them before ketones became even moderate.

    We're having problems with the pods right now. My daughter has had the last four pod sites become inflamed, which we'd never had happen in four years. She wore the Medtornic between the first two and the last two without problems. I'm concerned that she could be developing an allergy to the pod cannula or someone suggested the pods could be contaminated. We haven't tried one since.
     
  7. njswede

    njswede Approved members

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    Our pump just showed up at the doorstep. I wasn't nervous before, but looking inside the box with all those supplies was a little intimidating. Oh well, I think it will be just fine!
    20150722_122308.jpg
     
  8. Beach bum

    Beach bum Approved members

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    When our daughter was diagnosed at age 4, I had just hit my stride with balancing insulin and was comfortable with everything. But then Lantus wasn't working all that great for her (she needed so little during the day and it was a little here and there, Lantus wasn't the best fit), so we decided to pump. I WAS PETRIFIED. Going to all the pre-pump appointments, training, etc was just plain overwhelming. BUT, we knew for us that it was the right choice. I had to step outside my comfort zone and embrace it. When our second daughter was diagnosed at 13, she told our doctor "I'm want a pump right now, and can I wear my sisters old one until the new one comes?" Well, that made the decision for us!

    To answer your questions:
    1. Ya, the learning curve can be frustrating, and you may not see any better numbers, but you have the luxury of increasing or decreasing baseless based on the situation. For us, that is huge.

    2. Yes, there is always new technology. But I would say the AP won't be ready quiet so soon, and getting it at the end of the 4 years is probably a bit more realistic than 2. But, I honestly think the AP that is being talked about so much right now a)won't be ready for at least 4 years, if not more b)getting insurance to approve it may be a challenge c)it may not be approved for kids under 18... Technology is one that always gives people pause. "Will a new one come out? Will we want it?"
    3)Yes, ketones are always an issue with pumps if there is a problem. However, the Dexcom has made that less of an issue for us compared to when we started pumping 9 years ago. If we see those double arrows for an extended period of time and no explanation other than a new set or missed bolus, we know to check ketones ASAP. As for mechanical, I won't lie, yes we've had our problems. But, the pump companies (both Animas and MM) have gotten us new pumps in no more than 48 hours (one died on Thanksgiving). But, the problems have been few in the 9 years. I think we've had 3 pumps replaced. Not a bad track record.
    4)You will learn over time how to fine tune the basal to your sons needs. We use temp basals constantly. Not just for illness, we use it for activities, we drop or raise based on the CGM. I love that feature. And best of all, you can see the active insulin. No more writing it down, or using apps.
    5)My friend has had D for 50 years. Always until this week used a needle. She has minimal scar tissue. My other friend has had it for 30 years and has pumped for 20. She too has minimal scar tissue. The key is, just as with shots, rotation. If this is done, he will be golden for the technology of tommorow.

    And the first 2 weeks are bumpy, but don't let this dissuade you. It is a lot of fine tuning. Once you get to what works, you will be comfortable and he will love the freedom it gives him. When we started pumping with kid 1, I was here a ton, so many here helped me through. We'll all be here for you too!
     
  9. Beach bum

    Beach bum Approved members

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    LOL, it's like Christmas!
     
  10. Sprocket

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    I feel much the same about a pump. My daughter was 11 when diagnosed and we're 2 years into it. We too had no family history. We do very well on MDI as well, and have really learned to do our best and learn all we can. My daughter has no desire whatsoever to be attached to anything - pump or CGM and that's fine with me. She has no problem with injections. I have to say, we feel more in control I think than I would with a pump.
    The thing that worries me the most about pumping is not having a true basal insulin working in the background - like her Levemir. Has anyone ever heard of pumping only rapid insulin for the sake of convenience, but still using Levemir/Lantus?
    What my dd hates the most is testing. I can't wait until the Libre hits Canada -we'll be one of the first in line!
    In short, I totally get where you're coming from. You have done a great job and I think it's great that you're so supportive of your sons decision.
     
  11. Lori_Gaines

    Lori_Gaines Approved members

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    Yes, you can use the pump for bolusing only and use a long acting insulin. There are a few people on this site that do that. They call it untethered pumping, I believe.
     
  12. andiej

    andiej Approved members

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    what can i add to what others haven't. My son is 11 diagnosed december 2013, no previous experience with T1 so a very similar situation to your own. I would normally say good control can be even better with the pump but in your case perhaps not, my son started pumping in 4 months after diagnosis, we didn't do it for control we did it for quality of life. Pre pump his hba1c was 6.5...we got it down to 6.2....without any help from Dexcom etc. As for issues surrounding the pump in 15 months we've had no problems at all. I guess you need to way up the quality of life benefits my son really hated shots...he wouldn't have extra snacks as he didn't want an extra injection etc. if your son is starting to get fed up with shots maybe the quality of life will help, my son certainly wouldn't ever part with his pump he loves it. Only you know if you son is fed up enough what you don't want is for him to end up resenting having T1 or find he starts not doing shots because he's fed up of it all.....that said it doesn't mean you have to choose a pump right now....good luck.
     
  13. jenm999

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    We pumped for boluses only in the beginning and continued Lantus because his basal dose was so small and the minimum on the tslim is .1/hour. But without the insulin moving continuously through the tubing they had us prime 10 units before every bolus. So, not ideal.

    I totally hear all of you hesitant MDIers. It's a big change. For me it was seeing my baby hooked up to a machine keeping him alive. But he was motivated after going to diabetes camp and seeing the freedom it gave other kids, and we were desperate to allow him to get back more of the freedom he had pre-diagnosis in terms of going on play dates, to grandma's, etc. Calculating a dose is not something I felt comfortable having most people do, but supervising him entering the carbs on a pump is fine - the pump does the math. All they have to do is make sure he enters, for example 43 and not 34. He can "drive" it himself.

    That said, it sounds like your kids (all the reluctant pumpers chiming in) are thriving and independent so in that case I would not push it, let them take the lead, as you are doing. But I would not go back to shots.
     
    Last edited: Jul 23, 2015
  14. Beach bum

    Beach bum Approved members

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    We do untethered in the summer. We live at the beach, so to constantly be replacing insulin is tedious. We give a shot of Levimere in the am, plug in to bolus/correct as needed, then plug in overnight to give a small dose of basal to make the Lev stretch to the next morning. Has worked well for us for years.

    I recall there was one family here that did 100% untethered all the time.
     
  15. dpr

    dpr Approved members

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    We are 4 1/2 years into diabetes. This December will be 4 years of pumping. My daughter HATED shots. For her the pump was/is freedom. Literally in the middle of typing this at breakfast she decided was still hungry after eating. She went and got something else to eat, put the carb count in, pushed send and she's having a second helping.

    For us, we need the versatility of the pump for control. Her basal rates are as low as .275u just after midnight to 1.2u in the late afternoon. Long acting insulin's just can't keep up with those kind of changes. One thing to keep in mind is right now you have great control with injections but it probably won't always be that way. Diabetes has a pesky way of changing for what seems like no reason other than it wants to make it's own rules. A pump makes it a lot easier to adapt to some of those changes.

    The Temp Basal feature on pumps is the most useful features for high and low days. And during really bad lows you can turn the basal off to get a handle on it. If they're high in the middle of the night you can give a correction without even waking them.

    And since you already have a Dex, tuning the pump will be MUCH easier! A pump and Dexcom together is in my opinion the gold standard of diabetes care.

    So pumps have a lot of advantages. They don't come without a cost. The learning curve is steep. The first week will probably suck. There is a lot to learn about programming. Picking infusion sites and where to put them. Trouble shooting problems, etc. In some ways they make treating diabetes more complicated, but in the end they make life easier and more importantly, better for our kids. And I think in the long run it makes it easier to keep our diabetic kids and friends healthy.
     
    Last edited: Jul 23, 2015
  16. kim5798

    kim5798 Approved members

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    Pumping is definitely a better quality of life for your kid. Not always for the parent...but definitely for the kid better. Mine has been on the pump for what seems like forever. A couple years ago, she decided she wanted to be off the pump...all while doing an insane amount of dance. I am happy to report she learned & is back on the pump. I don't think she would go off the pump willingly again:)

    The dex will be able to help you fine tune things. You got this.
     
  17. quiltinmom

    quiltinmom Approved members

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    I want to echo a lot of things already said by others. A lot of our experience is as others have said--better a1c after we started pumping(although maybe not for you; yours is so low you may not want it to be lower), the convenience/ease factor was a total game changer for us. Instead of having to make sure we had insulin, ice pack, syringes, meter, low snack, etc. now all we need to bring (on short outings) is his meter and a low snack. So much easier! The flexibility it will allow, especially as he enters teenage years (where they want to eat 24/7), will be a good thing, I think.

    Something I didn't realize before we started the pump was the better high corrections. Before pumping we wouldn't correct until he was 250, unless it was meal time. but on the pump you can correct a 160 if you want/need. You can give them a little smidge for a slightly high number that you wouldn't have corrected for before.

    It also made him able to be completely in charge of his own care at school--no more daily trips to the office, unless something unusual was going on. Schools have a problem with kids carrying syringes around for some reason. Lol ;)

    He can go places by himself a lot easier. For example, going straight to a friend's house after school is no problem, he just uses the spare meter in his backpack and can eat and play and all that. At age 13, he has been going a lot more places without parents now, much more than when he was 10 or 11.

    As for site issues, that is rare for us as well. I personally can trust the pump 99% of the time. I was concerned about dka also. He hasn't tested positive for ketones since dx, pump or no pump. I'll allow that maybe we just haven't tested at the right time, but it was worry over nothing, for me.

    A lot of people say that the first weeks of pumping are really hard, but that wasn't our experience. Maybe we were just lucky, but the worst part was having to get up at night every few hours to test. He transitioned just fine from shots. It was pretty seamless. Maybe a tiny adjustment here or there. We also don't mess with basal rates all that much. There are people here who describe making basal adjustments weekly, but we don't manage that way. Ydmv.

    Already having the cgm will help you gain confidence in the pump; you will be able to check on what's happening without pricking his finger a hundred times a day. We are not on cgm right now, but I've wanted it for a long time. (It's expensive so....yeah.)

    Great job for following your child's lead on this. It is important to give them choices, and you are doing the right thing, in my opinion. :)

    If we could only have a pump for a small part of his life, it would be during the teenage years, for sure. :). Luckily we won't have to make that choice. His pump broke and we were back to mdi a couple weeks ago, and it was surprising how much we missed the pump after like 6 hours. Lol

    I know this may not take your concerns away, but that isn't my purpose. It is a big step, and I was nervous too. The vast majority of people who try pumping love it, and you are doing a good thing by supporting your Ds even though you are nervous about it.

    Good luck! Let us know how it goes. :)
     
  18. forHisglory

    forHisglory Approved members

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    Have exactly the same concerns as you. MDI has worked well for us. The Animas Vibe (as seen in that pic above) arrived 3 weeks ago and is sitting in storage. We are 100% covered by insurance since we've spent so much money this year and that's really the only reason I got it. I'm really hesitant, my son is willing to try it to see if it makes life easier. Still, how to keep it on an active, wrestling 6 year old boy? The CDE coordinator is calling us today. If I'm still feeling this way after the 1/2 day pump set-up.....I'm going to make sure we can get back to MDI without too much issue.

    I wanted to ask about your concerns when I read a previous post.....and I'm really glad you shared.

    Edited: length of time before site change on pump
     
    Last edited: Jul 24, 2015
  19. Dad_in_Canada

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    Careful. The Dexcom sensor "requires" a change every 7 days (though you can likely get more days than 7), but the insulin infusion set still requires changing every 2-3 days.
     
  20. hawkeyegirl

    hawkeyegirl Approved members

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    Keeping the site on is no big deal. My son has worn them during baseball, basketball, tackle football, and all sorts of general screwing around, and a site coming off is incredibly rare. I can't remember the last time we lost one. You do need to change them every 3 days, though.
     

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