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Help me understand

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

  1. jenm999

    jenm999 Approved members

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    We are only 2 months into diagnosis, so you may be laughing that this thread. I am wondering, if BG numbers are good and our son is happy with MDI, why go to a pump? Everyone I have talked to says it changed their (and/or their child's) life. Tell me, how?

    My son does not want anything attached to his body. As far as he's concerned, the two minutes of shots three times a day is totally doable. We just switched to the Humalog pen which is a revelation - easy to dose, more portable, etc. And he gets his Lantus via syringe once a day.

    You still have to count, measure and weigh everything that goes into your child's mouth, so that step is not eliminated.

    I know you will have tighter control with the pump, but also more risk of lows. As a new T1D parent, of all the risks with this disease, hypoglycemia - when I can't be with him, or am asleep and unaware - terrifies me.

    Why would you want to nudge a decent BG of, say, 140 downward and risk going too low? If the glucose meters are only within 20% of accurate, that 140 could really be 112, and that extra insulin could cause a low. Is not the 70-180 range they gave us a good target?

    I must be missing something. Share your wisdom with me, veteran T1D parents!
     
  2. ksartain

    ksartain Approved members

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    In our situation, the benefits are:
    1 shot every three days for the pump vs. 4-6 shots a day for MDI
    SOOOOOOO much easier at school!!! It's a lot easier to put in some numbers on a machine than prep, prime, then push a needle.
    SOOOOOOO much easier to leave Chris with other people. Many people are uncomfortable giving shots, especially to their grandson, great-nephew, etc. Again, it's a lot easier to punch in some numbers on a machine.
    Much more discrete when in public. This is important when dealing with kids who might not be 100% confident in themselves.
    Much better control. I know exactly how much insulin is working in his body with the push of a button. I can check his sugar and if he's high, the pump calculates exactly how much insulin to the .05 units that he needs. Add in the benefits of a CGM and that benefit is even more greatly realized.
    He can get more help. It's not just *me* that has to give him his shots. His older sister can do the pump if no one else is around that is trained. She wasn't too comfortable doing shots, but she was trained to do them as well.

    I'm sure I can think of more reasons as the day goes on. These are off the top of my head. And again, these are the benefits *we* see and notice.
     
  3. MomofSweetOne

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    When puberty hit, my daughter's basal needs differed greatly between the nights and days. On MDI, if I had her feeling good during the day, I was doing correction doses every three hours through the night to try to get her under 200. If I had her adjusted for good nights, she had to eat all day to keep herself above 70. My daughter is constantly hungry, but even she got tired of forced eating to feel good. Her response when I asked what the best thing about pumping is was "Not having 8 shots per day."

    Through puberty, we couldn't have maintained the control we've been able to without the pump and CGM. The A1C represents more than just the parent report card. It does reflect their risk of complications: Read Darryl's signature for the studies. Our team has never talked with us about complications, but as a mom, I want to turn her over to managing herself knowing I did the best I could to help her avoid the risk of them.
     
  4. misscaitp

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    I'm not a parent, but I am a person with T1. When I was diagnosed I had the same point of view that I do not want anything attached to my body and shots seemed to be working, my honeymoon lasted 2 years on MDI. My primary reason for switching to the pump was that it allows for more freedom and it is more precise dosing. On MDI you can't exactly graze on food, like most growing kids and teenagers like to do, you can eat at that one moment. On the pump I can put an extended bolus and that allows for me to graze at events and holidays. I also like that in a way it more discrete because while you do have something attached, you are not pulling out a syringe or pen to bolus--which I really liked as a high schooler. For sports and different activities it helps to be able to adjust the insulin you are receiving to the amount of activity. On MDI once you give the long acting insulin (Lantus or Levemir) you are stuck with that being in your system for the ~24 hours. It's also nice that you do not have to calculate the insulin dose, you only calculate the carbs and plug that in. The pump works well with sick days also.

    I know when I transitioned to the pump I was getting 6 shots a day and the pump was a nice replacement.

    There are T1s that prefer shots over the pump and some that have no thought about going on the pump, some don't want things attached to them or they don't want it to interfere with their occupation. I feel like the pump provided me more freedom, I've had tubing and non-tube pumps and I still prefer it over MDI.
     
  5. hawkeyegirl

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    There have been studies done showing that the risk of nighttime hypoglycemia is lower for pumpers than those on MDI.

    For us, the advantages of pumping are too numerous to count:

    1. Prebolusing, even when we're not sure how much he is going to eat. We are able to dose him for some carbs before he eats, and then when we is done, we add up the rest and dose him for those. Oh, wait! There's dessert? Okay, just another few button pushes. Easy, peasy. At a recent school event (book party for Charlie and the Chocolate Factory), another T1 mom was lamenting how hard these events were for her son, because he was just diagnosed in January and still on MDI. They either have to dose him up front and make sure he eats that many carbs throughout the night, or they have to have him save the candy and eat it at the end. With my son, we just dosed each time he wanted to eat a piece.

    2. Variable basal rates. You're newly diagnosed, so you don't know at this point how important this is for non-honeymooning kids. We have had times when his basal needs during one part of the day were about half of what was needed at another part of the day. It would be a mess dealing with on Lantus. I know people do go through the nightmare of growth spurts and puberty on MDI, but I have no idea how.

    3. Ability to turn basal off/down at a moment's notice. Your kid just ate and got his shot? And then threw it all up? You've got a much better chance of staying out the the ER on a pump, because you can immediately suspend basal.

    4. It's so much easier for caregivers, and much easier for my son to be independent. There's no way he'd be drawing up and giving his own shots at this point, but he boluses independently all the time.

    5. We have much better control on the pump. We probably bolus/correct 8-10 times on a normal day. Would we give that many shots? No way. We'd just tolerate those 160s until we could correct at the next meal. Over time, that matters.

    6. You still have to carb count, but you do not have to calculate a ratio, a correction factor or whether there is still insulin on board from a prior bolus. The pump does all of that for you. It also keeps a record of what you've done, so you're never wondering if you actually gave that bolus or just thought you did, and you'll never have a situation where you give Novolog instead of Lantus.

    7. It's more discreet than MDI. My son's pump looks like an iPod, and if you didn't know better, you'd think he was just fiddling with an iPod or a phone.

    8. My son doesn't feel any more "attached" to his pump than he does to his underwear. It's just something he has with him all the time. Essentially just like carrying a phone.

    We started pumping 5 months after diagnosis. At the time, we were doing well on MDI, and I wasn't sure we were making a good decision. It's hard for me to say how life-changing it was. The pump gave us as close to our old life back as possible, and we have never even considered going back.
     
  6. wilf

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    As long as he's honeymooning and he and you are doing well with the D management there is little reason to make any changes.

    Once it's over (and you'll know when it's over), you can give this more thought.

    DD is still not pumping, 8 years after diagnosis. She's fine with using syringes. I see clearly the advantage that pumps have, and the disadvantages. She was a quite a bit older, so we let it be her call. In your case, when the time comes where a pump may help improve the D management you should not hesitate to make that decision if you think it's the right one.

    But for now, I'd let it and enjoy that things are going well. :)
     
  7. Christopher

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    I am with Wilf on this one. If you are happy, your son is happy, and his diabetes management feels right to you, then why change things now? You have gotten a lot of good information about the pros and cons of pumping so if/when you ever want to make the switch, you are knowledgeable about it.
     
  8. hawkeyegirl

    hawkeyegirl Approved members

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    I'll respond to the "why change things now" questions. Because when the time comes where a pump really could make management a lot easier/better, she may have a recalcitrant 13 year old on her hands. It is much easier to say to a 6 year old, "Hey, we're going to try this to see if it makes life better" than to convince a teenager that you know crap about anything. My other response to that question is that things might be fine now, but she'll never know whether it could be better unless she gives it a try. It's not like it's an irreversible decision. If it's not better, they can go back to MDI and know that that is the best choice for them.
     
  9. rgcainmd

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    This ^^^, especially the part about "not knowing crap about anything"! (Been there, did that [not regarding T1D] with my now 24-year-old daughter).

    I agree that it cannot hurt to try and there would be nothing stopping you from going back to MDI if pumping wasn't a good a fit for your son.

    No disrespect intended towards those of you who are doing absolutely fine with MDI.
     
  10. wilf

    wilf Approved members

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    Here in our part of the world a pump is a $6000 device. It is provided for free by the taxpayers of our province to anyone with Type 1 D.

    It is pretty disrespectful of the societal commitment to supporting people with Type 1 D to suggest that when everything is going fine on MDI one should just get a pump and "try it", and if it doesn't work out switch back to MDI. That's a lot of money being wasted to have an expensive device sitting on a shelf unused if it doesn't work out. And if it's insurance that's covering it, that sort of frivolity is what drives up insurance rates.

    The only ethical way to just "try it" if you have no real commitment or need, is to pay the $6000 out of pocket. From an ethical perspective, that is how I'd approach this decision. Ask yourself, "would it be worth it to me to spend the $6000?" If the answer is no, then I don't see how you can reasonably offload the costs of your "trying it" to others.
     
  11. Snowflake

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    First, it sounds like what you're doing is working for you and your kid. That's great. I'm not going to try to talk you into pumping, just answer your "help me understand" question.

    When we pushed to start the pump, we were actually just reacting against our (former) endo's extremely inflexible MDI regimen. We were on a constant carb diet for our then two year old, with a sliding scale correction. So we were told that we "had" to feed our daughter the exact same number of carbs at the exact same time every day. Her ratio was so wide at age 2 that the only way we could increase her carb load at some meals was to fully double how much we offered her. It's a tall order for a little tummy to go from 25 to 50 carbs. (For some reason, our endo declined to write us a RX for diluted insulin, which might have alleviated some of that rigidity). The schedule felt impossible -- squeezing in 3 meals and 2 snacks in the 12 hours she was awake was quite difficult, and we often had to rouse her from a deep sleep for breakfast after a long night of fighting highs. She also ended up on a different eating schedule from her preschool classmates.

    So, in sum, we switched to a pump within 5 months of diagnosis, because as two working parents with a toddler and a newborn, the MDI regimen our providers told us to follow was just untenable. I have learned from reading this forum that MDI does not have to be as insanely rigid as it felt like to us at the time, but that's what we were reacting to when we pushed to start pumping almost immediately after diagnosis.

    All of the other benefits -- the ability to tweak basals depending on activity, the ability to bolus gradually in response to how much our daughter eats, the ability to correct a high before it gets out of control -- have turned out to dwarf the original advantage we were going for, which was simply more mealtime flexibility.

    I hope this discussion thread helps. But really, pump start is a medium-big deal and comes with its own demands, and I wouldn't feel any pressure to switch to pumping if you currently feel satisfied with MDI.
     
  12. hawkeyegirl

    hawkeyegirl Approved members

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    There is a 30 day return period here. Don't like it - return it. No harm, no foul.

    As for trying it and deciding you don't like it outside of the 30 day period, I don't see anything unethical about that. Situations change, people change, yada yada yada. It's not frivolous, and I think it's offensive to suggest that anyone is saying, "Oh just get it! Someone else is paying! Who cares if it doesn't work." That wasn't my point at all. My point really was that it's the sort of thing where you won't know if it will work better for your child unless you try it. So try it, and if it doesn't work for you now, ship it back, or keep it and try it again later. It's not an automatic waste of $6,000 if it doesn't work out now.

    We had no "need" when we started pumping, and insurance covered it 100%. If it wouldn't have worked out well for us, I would have cheerfully shelved it and tried again later. If you think it was immoral for us to try the pump under those conditions, you can honestly stick it.
     
    Last edited: May 15, 2014
  13. jenm999

    jenm999 Approved members

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    You guys are terrific! This is just the kind of personal testimonials I was looking for. Thank you!

    I have just watched about 4 Diabetic Danica videos. They are great. It's nice to see the technology stuff from the user standpoint, and also to see a young adult managing so well. I've got 10 years to train my little guy to be able to all of this on his own!
     
  14. rgcainmd

    rgcainmd Approved members

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    Diabetic Danica rocks; I swear that young woman has groupies and I guess I'm one of them! My daughter and I found her Dexcom video a tiny bit more helpful than the excellent Quick Start videos provided by Dexcom. There are some excellent YouTube videos about children with T1D. I highly recommend two of them (unfortunately I completely suck at posting direct links :(). One video features a little girl (age 6?) helping to change her Pod and another one shows a mom inserting a new Dexcom sensor into her little boy's arm (he must be all of 2-1/2) after which he says "That didn't even hurt!" except the cute little guy can't yet pronounce his "r's". You just have to see it; every time I've watched it, it's brought small tears to my eyes and a smile to my face.
     
  15. mmgirls

    mmgirls Approved members

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    Ok so go to the page you want to lilk to and copy the URL
    then

    just type the word "link",
    then double click it so it is selected in blue,
    then there is a little icon just above this reply window that has a picture of an earth and a grey "link"
    click that and a popup box will give you a place to paste the URL
    hit enter and that becomes a pretty hyperlink.


    otherwise just copy the URL (address bar) and paste in text
     
  16. rgcainmd

    rgcainmd Approved members

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    I'm going to print your instructions at work tomorrow and give it a go. You'd think I would have learned this by now!:beaten:
     
  17. nanhsot

    nanhsot Approved members

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    I agree with the others that if it's working, leave things alone.

    That said, 3 shots a day isn't really realistic for most people. My son eats roughly 1000 times per day (ok, exaggerating, clearly, but point made, I hope!). If you are only doing shots for 3 square meals and then then one of lantus (which is 4, actually), it doesn't seem to be a huge deal. But when you add in hungry male species, puberty, snacks, parties, corrections, etc, it becomes MUCH more than 3 or 4 shots per day. Pumping allows the child to simply eat, without worry about another shot. It just facilitates a more normal relationship with food, vs eating on a schedule or limiting to no carb foods to avoid a shot.

    Then there's the fine tuning of basal, which to me is the real advantage to pumping. My son needs double the basal at 3am than he does at 10pm; on lantus he'd wake up high every single day, the 24 hour quality of lantus simply didn't work for him. This was not apparent until after honeymoon. On the pump you can fine tune basals for every single hour of every single day. That's pretty amazing. Sick days mean you can lower or raise the basal temporarily (vs a shot of lantus that is in the system, even if they are trending low all day due to a stomach bug). Disconnect for sports, swimming, etc.

    It's just more adjustable.

    Again, if it's working, that's great. But there are some pretty big advantages to pumping related to eating multiple times a day (which WILL happen, he's a boy!) and customizing basal profiles.

    edited to add: my son did NOT want a pump. But as we'd met deductible that year, we just ordered for the future. He tried it and was immediately hooked. He'll try to take a break every so often but hasn't made it a full day yet before it's back on!
     
  18. DavidN

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    No one who tries the pump knows with 100% certainty that they will love it. So how sure do they have to be before they become unethical? 99%? 90%? 51%?

    You can continue your line of reasoning by asserting that no one really NEEDS the pump. Sure it makes life more convenient, but if hundreds of thousands of people can get by with MDI, why can't Bob or Mary the pumper? So does that make all pumpers unethical?

    I must say your preaching on pump ethics is a departure from your usual helpful and logical advice.
     
  19. sszyszkiewicz

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    Well we are recently diagnosed (just 6 months), still in the honeymoon, and we are doing Ok on MDI. We also use the pens. I am in no hurry for the pump. In a couple of months when puberty hits I will likely change my story, but hopefully that happens after the summer when the pool is closed and soccer season is over, and hopefully he will still have a honeymoon left to help us deal with it.

    In the end a CGM will give you visibility (and a good degree of safety) and a pump will give you a good deal of control/flexibility. I read these boards and see people say things like "I am running my son at 130" or some number and I am like, "holy cow, you can actually do that?" I don't run my DS at anything. I just try and keep it between the lines!

    I have read about people using both the pump and a shot of lantus, so if the pump fails you don't get slammed with a high blood sugar immediately. When I say a shot of lantus I mean some portion of your kiddo's basal needs are met by lantus and some are met by the pump. It also allows you to disconnect relatively safely if you want to go in the pool or take a long shower...or just not have that feeling of being mechanical/dependent.

    So for us the CGM really did bring some sanity back into the house. I attached a picture of how today is going for DS.

    todaystrace.png

    This is the kind of visibility a CGM will give you.

    The pump can wait (for us).
     
    Last edited: May 15, 2014
  20. Lysa916

    Lysa916 Approved members

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    We are not even a month into diagnosis so we are in a similar situation. ( my daughter is 13 )My daughter has no interest in a pump. When people hear that she has t1d they ask if she is on a pump or if she can get a pump or when is she going on a pump? I have no previous experience with t1d and I don't understand everything yet. Honeymoon, bolus, prebolus all these terms are a completely different language to me.
    What I do know that my child is not interested in a pump so we won't discuss it. She really isn't interested in having diabetes either but she cannot choose not to have it.
     

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