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Pump users who have CHANGED!

Discussion in 'Parents of Children with Type 1' started by Nancy in VA, Mar 26, 2014.

  1. hawkeyegirl

    hawkeyegirl Approved members

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    I think we must do things differently than most people. Jack wears his pump in a clear front pump pouch, so he just has to reach down and push buttons. There is no digging the pump out. We also probably bolus 3-4 times for an average meal. One prebolus, and then more as he eats. And eats and eats and eats. With him bolusing himself, it's much faster for him to just push the buttons than it would be for me to go get the remote. Car trips, parties, etc... he just doses himself. And the fact that they have to stay near you as it delivers is sort of a deal breaker for us, too. So often he just wants to dose and vamoose.

    I don't know. I thought we would love the Omnipod remote, but during our week on the Pod, it was more of a hassle than anything. We do not always test before we bolus, so it was a hassle to go find it when he wanted to dose. Nighttime is the one time when it was useful.

    But really, I think it will come down to whether you find the Ping menus tolerable or not. Coming from MM, I did not. Have you thought about the t:slim?
     
  2. missmakaliasmomma

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    I personally don't. one touch as a meter is too inaccurate for me. We've been using accuchek nano and just bolusing directly with the pump. Pretty sure well be looking at the tslim when it comes time for a new pump. I want it to be simple for my daughter when she starts to do it herself and so many people have saidthat it's very easy to navigate
     
  3. SarahKelly

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    Isaac is already wanting to bolus himself. We double check of course, but I think being 4 yrs into this it's something he's more comfortable with than I thought he'd be at this age. As for learning a new pump, I do worry about that. I especially worry about training family members again as the mm pump has taken a while to get everybody comfortable enough. I think for us it's the little things like when Isaac is in the car and has a snack or when sleeping and he needs correcting. His pump isn't always conveint to get at and sometimes I do wish we had a little more flexibility to not have to make him stop running around just to get insulin - boy typing that sounds funny, but honestly it is the only tihng we haven't liked about MM. Everything else has been great.
    I will definitely do more research before making a decision (ie play with an animas pump/ping or if possible one similar to what will be on the market when the integration finishes.)
     
  4. SarahKelly

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    I have thought about the tslim, my worry is about the durability of it - I guess I worry about not doing a pump that has been around long with a child that is very rough and doesn't care to slow down even if the pump falls out of his pocket! I wonder if they test for that! :)
    As for the omnipod I am intrigued by it, but Isaac's skin is so sensitive that we are using multiple barriers as is for the dexcom that I can't imagine us being able to use the omnipod without trouble. However, we will be testing it on his skin just to make sure as it would be nice for him to be tubeless for sports, swimming and (little reason, but his) to get dressed more easily.
    I appreciate the insight. I just feel like we need to find a durable non-intrusive to life pump as currently Isaac has been rather grumpy about t1d, he even had a pump break this weekend just to feel "naked" as he called it. So, whatever is chosen really needs to fit his desires to feel like comfortable and more okay about pumping. Not sure if that makes sense, I just know we're going through a funk and wondered if something that he didn't have to pull out and draw attention to himself might help.
     
  5. nanhsot

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    Our rep had my son THROW the pump as far as he could. She put it in a glass of water. Etc. It appears pretty durable, and it actually irritates me because clearly this technology exists for our cell phones too but they don't want phones to be durable!
     
  6. Melissata

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    Our pump trainer said that Tandem was talking with Apple about the screen. There are a couple of people on the FB tSlim group that say they get long tubing so that the pump will hit the floor if they drop it, instead of pulling their site out.

    Also wanted to say to the OP, that the Omnipod didn't cause skin issues right away for my daughter. It took a couple of months. Using cut the cord is the only way to go with Omnipod. You don't want to get stuck with a pump that doesn't work well for your child. As long as you have a back up pump, I wouldn't worry at all about the pump getting damaged. Tandem is using courier service to get pumps to people super fast, one said it was 12 hours after they called and it went to Florida from CA on the weekend I believe.
     
  7. hawkeyegirl

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    Yeah, my son never disconnects, so so far he has played an entire season of football and one of basketball wearing the t:slim with no issues. He also jumped in a pool wearing it (and the USB port was uncovered), and it kept on ticking. I've not heard people complain about its durability at all.

    Back to the remotes...there is one pretty big difference between the Ping and Pod remotes (other than the Pod having all functions on the remote). With the Pod, the remote has to be very close to the kid to deliver. BUT, once it starts delivering, the kid can take off. With the Ping, you can be farther away (6 feet?), but the kid has to stay there until it "pings" back the confirmation of the bolus. So if you are picturing dosing him from the Ping remote in the car...great. But running around at a party? Maybe not so great.

    Coming from someone who moved on from the MM last year, going to the t:slim felt like a definite step up. Our week with the Pod seemed like a lateral move, at best (and in practice, it was much worse because of all of the Pod failures). We have never used the Ping, but after playing with one, I felt like it would also have been a lateral move at best. There are times (mostly at night) where the remote would be handy, but otherwise, the functionality of the pump menus is a step back from MM.

    If durability is your only issue with t:slim, I'd take another look at it. Honestly, with the way it's constructed, it wouldn't surprise me if it's the most durable pump on the market. I think at FFL last year, they challenged kids who were trialing it to TRY to break it. I believe only one was successful. I can't remember what they did to actually crack it, but it was crazy.
     
  8. MEVsmom

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    You can probably thank the FDA for all their ridiculous red tape.
     
  9. hawkeyegirl

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    Yes, some of it is the FDA. And some of it is that Dexcom keeps producing new versions of the Dex. Dex is a small, nimble company, and they keep moving CGM technology forward. It takes at least 3-4 years to build the product, conduct the studies, and get a product through FDA approval. So Animas sticks the current gen Dex in their pump, does the studies, submits to FDA, and BAM! Dex has a new product out. Honestly, I wonder if integration for anyone other than Medtronic is terribly feasible, because of this issue. I mean, I know Animas will get the Vibe out here at some point. Probably just when Dex releases Gen 5. And then you've got a brand new pump with already outdated technology.

    I think Animas completely underestimated this problem.
     
  10. Don

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    The integrated product is fully designed and submitted to the FDA and is already sold outside the US, so absolutely yeah this is 100% clueless-FDA delay. Don't recall where I read this but my head tells me to expect launch in October.
     
  11. hawkeyegirl

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    Yes, the current delay is FDA-related, but you can't blame the past 7 years on the FDA. A good portion of this is due to the problems with integrating products from two different companies.
     
  12. Christopher

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    That " ridiculous red tape" keeps people safe. You should do some research on what life was like prior to FDA oversight. You can start with the Elixir Sulfanilamide disaster in 1937 and the Thalidomide tragedy in 1957, to name a few.

    Can the FDA's processes be improved? Of course. But to make a blanket statement like that is not accurate and shows a lack of knowledge about how things actually work.
     
  13. Christopher

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    Just because something is already sold outside the US, that doesn't mean it should automatically be OK for sale inside the US. Again, do some research to better understand the workings of the FDA and why we have some of the "clueless delays" that we sometimes see. When a pump malfunctions and kills someone the same people complaining about the FDA delays will be the same ones complaining that the FDA didn't do more to protect the public.
     
    Last edited: Apr 21, 2014
  14. kiwikid

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    I don't think this is totally FDA.. The Vibe has issues... Not with the Dexcom but with its IOB calculations ... Animas has been informed that the pumps are showing IOB after the DIA has expired and so far thanks have been given for pointing this out but no fix has been offered.. I don't think Europe has such tight standards as the FDA.. This has been an issue reported in the UK and NZ.
     
  15. MEVsmom

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    Wow, the people on this board are so nasty and condescending sometimes it is ridiculous. You don't have to take everything so literally. I had typed out a long paragraph about my experience with the FDA, but it really doesn't matter. You are clearly smarter than me.
     
  16. missmakaliasmomma

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    Exactly why I barely post
     
  17. hawkeyegirl

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    Whoa. Not sure why people are getting so hot and bothered about Chris' post. We're discussing FDA delay here...not nighttime testing. You can disagree with his opinion, but I don't see where he said anything offensive. We were told when we were choosing my son's pump 6 years ago that Animas would be integrating with Dex "soon." Clearly the FDA is not the only problem here.
     
  18. sszyszkiewicz

    sszyszkiewicz Approved members

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    Its been a while for me, but the trick to message boards is realizing that what people type can often be construed many different ways....and if someone takes what you type the wrong way try and see why they may have taken it that way.

    Also take into consideration the fact that many of us are sleep deprived. ;)

    If there are certain people that are always jumping down your throat, simply ignore them.

    Remember if you are here, and you have some experience to share, then please share it. Us newbies need you!
     
  19. nanhsot

    nanhsot Approved members

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    ^^^^ THIS^^^^

    Chill, settle, show grace, don't read between lines that aren't there. There are strong opinions and sometimes people even get upset. Christopher, in this situation, did not. He's a little more seasoned in the industry than most of us, so I respect his opinion in this matter. FDA may be slow and laborious, as most government agencies tend to be, but rushing this particular process has shown to be problematic.

    So says a mom whose life was altered by the drug DES in the 60s.
     
  20. Christopher

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    I don't think I was nasty or condescending but I'm sorry if you took it that way. I was just trying to point out that even though it is frustrating when it seems to take forever to get FDA approval, there are often good reasons that may not be apparent to most people.
     

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