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Need advice - Best pump?

Discussion in 'Parents of Children with Type 1' started by ChazDad, Jun 12, 2013.

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  1. missmakaliasmomma

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    If it makes you feel any better, we actually picked our pump out and attended the classes a year before we actually used it. I got it last summer and I was all gung ho and then I got it and decided we weren't ready yet, but I was definitely going to do it before kindergarten. It gave me another year. my dds endo gave me no problem whatsoever and said when we were ready, we'll do it. We started using it in the middle of april this year.

    We weren't told about the tslim either and it was probably because 1- that "not approved for kids under 12" and my daughter was 3 at the time we got the pump and 2- it's so new they probably don't know much about its reliability yet so they don't want to give the wrong advice.

    As far as lantus being the same dosage as humalog is on the pump, it doesn't happen that way. My daughter was on 1.5 units of lantus and is on 2.7 on the pump. Seems like a lot of people have to increase since these two insulins don't work the same way at all.

    Also, if he's sick and you need more humalog, you're going to need to increase lantus as well, -IF he IS sick. However, gradually these dosages need to be changed anyway because they're always growing. Your dosages will always be changing, on the pump as well.

    Nobody knows when the honeymoon stage will end, that's why they can't give you an answer. Everyone's different.

    To the people arguing about the pump not changing anything when your just sick of diabetes, sounds about right to me. If you're sick of it, you're sick of it, pump or not. On mdi, you're a slave to shots, the other you're a slave to wearing a medical device 24/7. Why wouldn't someone get tired of that? I'm expecting my daughter to get tired of it eventually, I'm hoping she doesn't, but I'm expecting she will
     
  2. nanhsot

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    We had the same experience wrt lantus and novolog, needed a LOT more via pump than lantus, for basal.

    WRT the other issue, I do think actually that pumping can be a game changer in attitude. To go from having to give a shot, think back to when your last shot was, mentally recall iOB, when was my last correction, etc, etc and THEN give a shot to....input carbs/BG into pump and press button, eat. Hungry again 30 minutes later, hit button and eat. Leave house with meter in pocket, no more lugging of insulin and needles. Etc. It truly is a game changer and gives a ton of freedom.

    For my son overnight basal is the biggest game changer though, to be able to tweak things so he doesn't wake up high like he does on lantus (strong dawn phenom), it changes his entire attitude about his life, not just his diabetes.

    My son, every so often, will decide he's sick of pumping and will go MDI. He's yet to last more than 8 hours back on shots. It's that different.
     
  3. ChazDad

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    Just got off the phone with T:slim CS. Weird call, she said she was new and I had to explain a lot of things to her about concerns I had, rather than her explaining to me. A lot of emphasis was put on "Let me get your Insurance info, what is your son's social security number" which I found strange since I hadn't gotten that from the other 3 companies at all. Very off-putting for an initial "tell me about your product" call. At least, that's how I felt.

    After researching the T:Slim, it looks nice and high tech, and the software seems more up to date than others, but a couple of things I didn't like were (1) the BG monitor is not tied to the pump, so you still have to manually enter your BG (not that big of a deal, but I was surprised), (2) there is no auto-basal correction for a disconnect, (3) bolus increments are 0.1 with a minimum of 0.5. Since my DS is on a 1/40 CHO ratio, I guess his snacks better be a least 20 carbs for the time being, or else the pump cannot deliver less than the 0.5. These points were all confirmed by their CS sales rep I spoke to.

    When she asked if I wanted to have a rep come to my house to demo the unit, I said "Yes" (for the first time.) But then she said I'd have to fill out some forms with Insurance info and also get my endo to fill out a form to get that done. Since I'm not seeing my endo for another month or so, that is a bit off-putting as well. Maybe the other companies would have asked me for the same info, had I agreed to a demo, so I cannot hold that against them, just found it a bit odd is all.

    I called the diabetes team at the hospital to see if the T:Slim will be approved, and I'm waiting for a callback. I'll post again when I know more.

    Anyway, I wanted to thank you all again for the advice. I think SandiT and I are very similar - she seems to know my thoughts and is on-target about me hoping the pump will help my DS lessen his anger over his diabetes. We're at about the same timeframe since dx - I believe SandiT has 1 more month experience than me, so I appreciate the comradery. And the detailed info and advice from the rest of you is very much appreciated.

    @Beachbum - no support group (that I know of) at the hospital, but there may be one. Also,thx for info on honeymoon - btw, he was 1/60 CHO and 4.0 lantus last week. Now he's 1/40 CHO and 4.5 Lantus, and I have a call in to again to increase more based on his recent numbers. So he may have doubled in less than a week on the CHO (but not so much on the Lantus.) Then again, in January he was 1/10 CHO and 10.0 Lantus for the first week. It went down steadily each week / month since then, until now.

    @SandiT - No smartphone either? So you're the other one T-mobile told me about (lol) :D

    @missmakaliasmomma - for info on basal lantus vs pump humalog basal dosage, thx - that's exactly what I wanted to know.

    @nanhsot - game changer? That's very encouraging, thx.

    Gotta decide if we're gonna wait, get it now, do some more research, lots to think about. Thx again all!
     
  4. ecs1516

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    Which pump does the above 2)? I know the Cozmo used to do this but I did not know the others did this. Also, one thing I found out is the T:Slim does not do is negative corrections unless BG is below 70. Some people may not do this but, we have always done this on all our pumps. For example, if my child was 80 they would use the negative correction to take insulin off the carb bolus. It was just easier than guessing how much to give free at a meal or snack. Works for us but may be not others.
    I know the Animas Ping does negative corrections. Unsure of Minimed Revel.
     
  5. SandiT

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    Yeah, I have great hopes for the pump, as well, but I've heard over and over and over again that it's not a panacea for the emotional issues around diabetes. I've also met a couple of other people in our area who recently went on the pump, and they've reported that at first it made a huge difference but that it very quickly turned into different arguments and issues.

    So while I think we're both holding on tight to our high hopes (secretly, of course!), I also want to make sure that there's that reality check, too. It MAY turn out to be the best diabetes thing since sliced bread... but it might not. And I get the constant warnings not to expect too much from it because it's not always the best and most exciting thing since diagnosis. Sometimes it is for a few days and not after.

    Which, as you and I both know, doesn't stop us from that secret internal, "Oh, I just KNOW this is going to be HUGE!" :p

    They've asked me over and over what I want from the pump and warned me over and over not to have unrealistic hopes that it'll "make diabetes okay" for my daughter.

    In the last month I've sat and commiserated with two parents who recently changed to the pump with the same high hopes I have, while they cried while their child was in the other room. Maybe sometimes when people have been years out from that first pump decision, it's like having a baby and you can forget some of the new challenges that came with it (or with the decision itself).

    It's easy to say in retrospect that it was a good choice, or to say that having a baby is not so bad... but sometimes when you're in the thick of it, it can be confusing with all the "hope... but don't hope for TOO much... but hope... but be realistic.. but..."

    My stomach is in knots over it. There really IS that hope, but then there are other parents I know who recently changed over and are experiencing issues (both with the pod, by the way. Not saying that means the pod is bad, just saying that's what they both have). Their tears were very hard for me, and it does dampen some of that expectation.

    At the same time, my child "should" be able to eat when the other kids eat. She "should" be able to eat when she's hungry, even if she's a grazer. She "should" be able to enjoy eating out with us more often (we do it less because it's kind of hard right now).

    So while I am working really hard not to have unrealistic expectations, there are things that make me feel like the pump choice really is right. Fine, I shouldn't expect it to be a panacea (and as I said, recent events with other families new to the pump have disabused me of that somewhat), there are factors that still make me think it's the better choice and that it will alleviate some of her greatest issues with feeling so DIFFERENT. They seem to happen around times when food is refused, so if we can alleviate that, we'll have other issues, but at least not that one. :p

    We have that hope, and it might be a realistic one. But I hope we go into it understanding that it might not work out that way. So making the choice seems to be wiser made on other factors than whether it will fix the anger--because it very well might not.

    The greater question is whether it will, even if it has its own frustrations, be an over-all step in the right direction? I think so, for us.

    Sometimes, like I said, it's easy to see in retrospect whether the pump was THE moment of change or not. But not all families have the great first experience and it's not until later that it becomes "I'm glad we did, but it wasn't easy!"

    *Raises a glass* Here's to that secret won't-quite-die hope that our families have the "yay for the pump!" experience.

    :D
     
  6. nanhsot

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    You might read through this thread:
    http://forums.childrenwithdiabetes.com/showthread.php?t=73608

    It specifically says it delivers .01, so being told it only does .5 confuses me.

    I don't think any current pump does an auto basal correction for a disconnect, unless I'm just missing that! My son disconnected a lot for football so I think we'd have found that, eventually.

    I had the opposite experience with the phone call to tandem, the person who answered had T1 and was simply fabulous answering all my questions, and once I had all the info I needed THEN she asked if I wanted to send in my info. I've been beyond impressed with their professionalism and friendly attitude. Sorry you were off put by them.
     
  7. hawkeyegirl

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    The information you were given about the tslim was flat-out wrong. (Or you misunderstood.) I just had my son bolus for 1 carb, and it delivered 0.08. It definitely has the smallest increments on the market (0.01). It also allows the smallest increments when it comes to things like extended boluses and temp basals (down to the minute). Also, Nancy is right that none of the current pumps on the market automatically replace basal after you disconnect. As for the linked meter, it's true that they don't have one, but we just came from a pump that did, and we never used it because I hated the meter. Not all meters are created equally. ;)

    You don't have to see your endo to get them to complete the necessary forms for the pump companies. You just fax them the form, or the pump company will do it for you. This is very common and shouldn't surprise your endo at all. Tandem just wants to confirm your insurance coverage so that they don't waste your time looking at a pump if your insurance company doesn't cover it. That's pretty standard.

    Our customer service experience with Tandem has been extraordinary. Beyond excellent.

    For what it's worth, we DID find the pump life-changing, and it gave us as close to our normal lives back as is possible with diabetes. I cannot imagine ever going back to shots, and neither can my son. It was that way from the very moment he put it on. The notion that I can't remember or am viewing it with rose-colored glasses in hindsight is...completely unfounded. :rolleyes: (ETA: That is VERY different from saying it was easy immediately. There was a steep learning curve. But the emotional benefits for both of us were immediate.)
     
    Last edited: Jun 13, 2013
  8. nanhsot

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    I wanted to address this specifically, if you search general pump start threads you will see that I VIVIDLY recall how difficult pump start was. I am often on here cautioning people about the difficulties of those first weeks, they were truly horrible for him.

    It's been 3 years, almost. The memories are very strong about the decision and about pump start. It was hard. He didn't want a pump, was fine with MDI. It was a difficult decision, no doubt. I don't think anyone is saying otherwise. But it's totally worth it.
     
  9. ChazDad

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    A few hours later, the saga continues......

    The local rep from Tandem (Brett) called me and he was a 100% reversal of my first experience with Tandem. He has T1 and wears the T:Slim pump right now. So he can relate, which is comforting. He told me the girl I spoke to was new, and wasn't accurate in what she said (or I heard wrong, which is possible since I haven't slept now for over 24 hours.) He said the minimum increment is 0.05, not 0.5 - Big difference if you ask me. He also explained the whole thing MUCH better, in fact, when I hung up with him I felt like, "Yea, this is the one we need to get." First time I've felt that positive since this all started.

    BUT.... the hospital called me back and said that no, they cannot approve the T-Slim because it is not on their approved product list. Now this is the tricky part - it's not that the Insurance won't cover it - in fact they will (said Brett) - but the hospital requires a class to be taken to get the pump and since this product is not yet on their approved kist, they are not trained in teaching us about it, so therefore I can't get it.

    I called Brett - he said, no worries, he already has an appointment with the head doctor who runs the diabetes program there in July. He's going to try to call her to make an appointment sooner so I can choose this pump if I want it. He also told me that even after he does all that, if I don't choose the T:Slim, it's okay. Wow. Now that's good customer service.

    To address the inaccuracies you've been pointing out from my posts, such as the basal tracking when you disconnect the pump, I am getting most of these from what I was told by the sales reps on the phone. I took notes, pretty good ones (I thought), and that's where I got them. Here are some notes I took:

    T:Slim (original CS rep) -
    - When newer pump comes out with integrated Dexcom CGM, we will be able to upgrade for a nominal fee around $200-$300
    - We are the only pump that meets the 2010 FDA Safety Guidelines. All other pumps are only compliant with the 2004 guidelines.
    - The T:slim will fit into the coin pocket of your jeans. (I really don't believe that one)
    - The minimum bolus is 0.5 per hour (second CS Brett said this is wrong, and that the minimum basal is 2.4u per day, and the minimum bolus is 0.05 and then moves up to 0.1 then in 0.1 increments, but this pump can also do carb boluses at 1/1000ths, ie. 4.127u)

    Animas CS Rep -
    - It is waterproof for up to 12 feet and 24 hours, the others are not
    - If you disconnect to play football, the unit keeps track of the basal not given and makes up for it upon reconnection. However, it cannot track the basal lost during a battery change. (This is what he said, I wrote it down, so if the Animas doesn't do that, then either he misspoke or I misunderstood what he meant.)
    - they have the smallest dosage increments compared to other units.

    Medtronic CS Rep -
    - The Revel is better because the Ping has no "Back" button" and the Omnipod has poor adhesion and falls off frequently, also the Revel holds 300u and the Animas Ping only 200u, and the Omnipod wastes Insulin due to the minimum required in each pod, and also is wasteful because when pods fall off you lose all the insulin
    - The Medtronic technology guarantee only applies if you buy both the pump and the CGM at the same time. You cannot get a free new pump when it comes out unless you also bought the CGM initially.
    - It tracks active insulin in the body; others do not (that's what she said, pls don't correct)
    - It is water resistant only, not waterproof (I've read your posts, no need to correct this point, thx, just writing what she said)

    Omnipod CS Rep -
    - It is the only tubeless pump on the market and it avoids the hassles associated with disconnecting pumps for activities and swimming
    - The pods needs a minimum 85u
    - my son can play football with the pod on, no problem
    - pod failures are mostly a thing of the past, since 2008 the incidences have dropped considerably. Plus they have a free replacement program. They study bad pods to improve the future design.
    - the newer, smaller pod and PDM will have less problems due to better adhesive that makes the pod less "wiggly" and less likely to get knocked off
    - if I am worried about skin irritation, there is a product called Tegaderm that can be used around the pod (I haven't researched that yet)
    - I should not worry about occlusions as the canula has been redesigned on the newer pods at a 60 degree angle to correct that. Also, he said the Omnipod has a lower occlusion rate than other infusion sets.
    - the Pod is waterproof for 1 hour up to 25 feet, but he wasn't sure how long you have to wait to make it waterproof for another hour (I asked it DS swims for an hour, then takes a 15 minute break, could he go swim for another hour? He said good question, he wasn't sure.)

    There you have it, some of my notes from my conversations with the sales reps. If there's wrong info in there, I dunno what to tell you. That's what I was told, I wrote it down when they said it.

    Brett (T:Slim) said he will try to come this week or next, and my wife told me I should listen to you all and not rush this, so that's the plan for now. I'm not going to rush anymore, I will tell the hospital that tomorrow, and research this some more so I can really get my facts straight. Those links that some of you posted to comparison websites are helpful, thx for those. I will be reading a lot more, but now I'm finally going to get some sleep. Thx again to all of you. Peace! :cwds:
     
  10. missmakaliasmomma

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    Unfortunately I still carry the same amount of things lol, I just don't carry insulin anymore so it's easier because I don't have to keep it refrigerated. My daughter didn't mind mdi in the least because those needles are sooo tiny you barely feel them. I don't think she'd care if she had to go back to mdi. Maybe as she gets older though, she's still too young IMO to truly know what's going on. She just wants to play. Her endo did explain to me though that the sooner she went on a pump, the sooner it would just become a way of life and she'd have much less of a hard time adjusting then someone going on at say.. 15. So I'm hopeful that she won't mind it when she's older.

    the basal issue is definitely SO much better. I love being able to change it even hourly if I have to. My daughter does not have that dawn phenom. yet. She's actually low in the morning as opposed to high so I'm working now on tweaking her basals so she's better in the morning.
     
  11. ecs1516

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    I need to find out, if Animas does that reconnect feature I would use it for sure. Also, last year Animas was telling us that with the purchase of a new Ping you can upgrade later to the Animas Vibe (the Dexcom integration ) for only $99.
    Medtronic Minimed was also posting on their website this : For a limited time only, customers purchasing a new Medtronic Paradigm? REAL-Time Revel? System (insulin pump and CGM) will be guaranteed an upgrade to our latest technology when it becomes available at no additional cost.
    Animas loses IOB when doing a battery change but Minimed does not. Not a show stopper for us. We use Lithium in the Animas Ping and only change it about 4-6 weeks. If I change a battery I just look at the IOB screen and write that down and do a air bolus after the reload .
     
    Last edited: Jun 13, 2013
  12. missmakaliasmomma

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    I'm not sure how far you and the OP are post dx but I remember feeling the same way for a long time. It was very hard at first to know my daughter would need insulin her whole life. It still gets to me at times but I tell myself that she's still ok and she's here with us and that's what matters. It took me awhile though to get to the point we're at now (over 3 yrs since dx)

    The pump is frustrating in the beginning, I wouldn't let anyone else try to tell you that it's a walk in the park from the start. There's a lot of fine tuning & there's basal testing where your child can't eat.

    The pump was a big decision for us as you can tell from what I said about putting it off for so long. If you don't like the pump, just go back to mdi, no harm done. Just remember, it is hard in the beginning but it gets better. Just know that most people don't regret it, there seem to be only a handful that went back to mdi permanently. Some people take pump breaks which I would think happen because you might eventually have a lot of scar tissue from where the sites are.

    Don't let other people's issues with their pumps stop you. It could be user error on their part and personally I find on here that people have more issues with the pod than a tubed pump. We're only about 2 months into using the pump and it doesn't bother my daughter in the least.
     
  13. nanhsot

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    For him it really depends on how far from home he'll be. I keep a single syringe and a spare battery, plus a few packs of smarties in his meter pack, so he can grab that and pretty well deal with basic emergencies. If he's more than an hour from home or going overnight anywhere, he takes spare sites. I'm sure that if *I* were in charge of carting things around I'd be prepared for every contingency and I'd carry quite a lot too! But he just grabs his meter and goes.

    Yes, being a teen definitely changes things! He can eat 20 minutes after a meal, and then an hour after that, so just that freedom is pretty significant. Every time he tries to go back on mdi for whatever reason he gets so sick of having to draw up insulin, take a shot, etc, vs just punching a few buttons.
     
  14. Lee

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    I just want to address something that I am seeing in this thread. Pump Reps are SALES PEOPLE. They make COMMISSION. I would 1000X's rather believe real life examples and experiences from Type 1 parents on this forum then I would a sales person looking to make money off of my child. Just my two cents. When Hawkeye Girl says it does or does not do something, then believe her - in my mind, she is the single most authority on this forum. She has done more research then any person here and she has used 3 pumps now. SHE KNOWS WHAT SHE IS TALKING ABOUT.
     
  15. rachabetic

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    I haven't read all of the last posts, but I just saw one of the things that the Tslim rep said, about the Tslim fitting into the coin pocket on jeans. It totally does! That's where I've been wearing it for the past few days. I didn't believe it either....until I tried it. :D
     
  16. Debdebdebby13

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    I'm glad you got to talk to all of the different reps. One word of advice, don't take the word of the rep of one pump about the cons of other pumps. They are trying to hawk their product, they likely have little to no experience with other pumps and they are trying to make money on their product.
     
  17. missmakaliasmomma

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    None of us are doctors, just parents. Telling the OP to listen to one person because they've had 3 pumps is ridiculous and I wouldn't listen to you either. It doesn't change the fact that everyone's different and if one person recommends one pump that doesn't mean it's good for everyone. The OP is going to listen to the endo before listening to someone they doesn't even know on a forum. I'm sure they trust the dr more. They're looking for opinions...It's not their fault if the reps don't know what they're talking about. They can always ask the endo to confirm. Give the OP a break, they haven't been doing this very long

    Everyone has different "real life examples and experiences"
     
  18. Lee

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    Oy. I wasn't saying listen to one person - I was saying that people here are not trying to sell you something. The people here are dolling out advice from the good of their hearts. I never told the poster to not listen to the endo, I don't even know what hole you pulled that load from (which is really ironic since I am usually the first to tell the poster to ask their endo first, then us second). I told the guy to take what the SALES PEOPLE are saying with a grain of salt. I thought that was INCREDIBLY helpful, especially if the person, being new and all, was not aware that the rep had his or her own self-interest at heart, not the overall good of the child (not that they mean the child harm - they just have a mortgage to pay).

    But hey - just throw my 8 years of dealing with diabetes out the window as well, because I obviously don't know what I am doing and have absolutely zero good advice. :rolleyes:.
     
  19. hawkeyegirl

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    As much as I'm all tingly from the lovely things being said about me, I am just one poster, and everyone is free to take or leave my opinion as they see fit. :) However, I do try to make it clear when I'm giving my opinion and when I'm presenting fact.

    Opinion: I think the tslim has the best combination of features on the market today.

    Fact: The tslim can bolus down to the thousandths place.

    Opinion: I find the lack of a back button on the Animas crazy-making.

    Fact: The Medtronic pump has a different connector for the tubing than other pumps, but has the same site options.

    You can absolutely discount my opinions. But I try to be really accurate with my facts (as do most of the long-term posters on here). I try not to post something as fact unless I am really confident that it's true. It's why you'll never see me go into detail about the Animas pump. I've never used it, and I'd prefer that the folks who have be the ones to educate people on here about that pump. And when it comes to opinions on the features and wearability of the pumps themselves, I'd take the advice of the good folks on here over 99% of endos any day. With the exception of endos who are T1 or have a T1 child, on this matter WE (collectively) are the experts, not the endos. (And good endos will admit that!)
     
    Last edited: Jun 13, 2013
  20. MamaC

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    I just want to add that after seven years, six of them with the most fantabulous pediatric endocinologist I could ever hope for - I have gained far more REAL WORLD, REAL LIFE knowledge from this site and its members than I can ever explain. Knowledge that the endo appreciated me having because it made her job easier for a challenging case (my son). Knowledge that allowed me to write off my son's initial CGM trial as badly managed and lacking in basic information, and encouragement from some of the very members posting in this thread to go forward and try again when the G4 came out.

    So yeah, when Hawkeyegirl and some other members offer something up, I'm buying it.
     
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