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Truth comes out about why son does not want the pump today at Endo visit

Discussion in 'Parents of Children with Type 1' started by grantsmom, Apr 16, 2010.

  1. grantsmom

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    Endo told Grant today that NPH is not working. He has been on it for two years and his A1C is in the low 9's and we see a lot of highs and lows without explanation.

    She told him it was his choice for MDI or the pump. He was very quiet and would not ask a lot of questions.

    When she left the room to get something he said to me, "Mom, do you know that the pump can malfunction and it can pump all the insulin in me and I can die?". I told him that I had not heard of that, that I thought the pumps had safety stops in them, but when the doctor came back in, to ask her.

    He did and she told him that yes indeed that can happen. She said it is rare, but could happen. She said if he felt low he would need to always check the cartridge and see if the insulin had all disbursed. If it did, he needed to go immediately to the ER and get a dextrose drip and be monitored.

    Ok, I do not know much about pumps (mostly because he has refused before) but is this true?

    He may be somewhat interested in the OmniPod. Anyone have any input on that?
     
  2. swellman

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    I have never, ever heard of this before.

    If this is true, then the FDA is required to document medical device malfunctions and this information should be available to the public. I will do what I can to see if I can access the adverse events database to see if there are any documented cases of a "pump runaway".

    I am going to go out on a limb here and state an opinion that is admittedly not based on my understanding of documented cases but ... this falls under the "people have been known to be killed by their safety belts in an accident so I don't want to wear one" category.

    I sympathize with his concern but my gut tells me that his fear is irrational. Tell him it's one in a zillion ... that's my advice.
     
  3. kiwikid

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    I have heard that it could happen, but I've never heard of it actually happening. The pumps have so many self check and safety features that I think your Endo is scaremongering. I certainly never check the cartridge everytime Rachel is low... :eek:
     
  4. grantsmom

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    Thanks..

    The Endo was very good in explaining that this would be very very rare when I asked her how often this happened. She said it had never happened to one of her patients.

    She told my son that life is full of things that we cannot control 100% and wearing a pump is one of them. She told him that she felt the positives of the pump would outweigh any negatives.


    Since he is 14, I believe he has been researching D on the internet. I have had to have talks with him that I wished I never had to. But it is my job to answer his questions honestly and try to limit his fears and aniexty.
     
  5. swellman

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    I believe that you should sit your son down and explain to him, as everyone should be equally aware, that the horrible, nasty, irrational, minority of negatives always bubble up to the top of the internet search engines.

    Please research and explain the meaning of "anecdotal".

    I really hoped I could find an actual representation of this but you could get, say, twenty 20 sided dice (geek alert) and roll them a few times and ask "what do you think the odds of all 20 coming up with a 20 are?". This is the odds of a pump malfunction. I'm generalizing of course but I think it could serve as a visual example of risk vs benefit.

    I'm sorry for this but you should consider discussing the actuality of complications of a lifetime of A1cs in the 9s vs a pump malfunction.

    $0.02
     
  6. wilf

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    I think you guys can make MDI (or a modified MDI with less NPH) work a lot better than the current regimen. But I would never let what she said stop me from getting a pump if DD wanted one.

    I have only heard of one case where a pump emptied into someone, but that was because they did a series of really stupid things that overrode the safety features. If your son got a pump and used it as instructed I would see the risk of this weird scenario as being equivalent to zero.
     
  7. grantsmom

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    Yes, the Endo and I did discuss with him the complications he could face with high A1c's and how the pump helps that.

    I agree with the internet..it can focus on the doom and gloom first and foremost. When I thought our son had D (no family history so I stumbled on it while searching symptoms) all the horrible things made me so sick I threw up.

    This is why I have always tried to be open with my son and answer things as honestly as possible.

    The sad thing is this...his odds of getting D were slim...I think he now looks at "slim odds" as more of a reality since he got hit with D.

    I understand the fear...I live it too. You just choose to push it aside, do the best you can and be positive.
     
  8. grantsmom

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    Thanks Wilf,

    Son really does not want the pump. He actually told me about a month ago he would rather die than wear a pump. It just broke my heart.

    I think a lot of it has to do with his fears. He does not like change. He does not like something attached to his body.

    I am hoping the educator will help us when we meet with her.

    He was at least asking questions today which I thought was a positive.

    I have offered to have him meet other kids with pumps, but he refuses.

    Either way, I will support him and we will all work together to try and manage it the best way.

    It just seems painfully clear NPH is not going to work for him.
     
  9. wilf

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    DD doesn't want a pump either, so I can understand your son.

    The way your endo had you using the NPH couldn't work. Take a look at my post in the other thread to see what might work for you.. :)
     
  10. swellman

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    I read back and I wanted to make clear that it was not my intention to imply "pump or else". My only intent was to alleviate irrational fears of pumps. You can certainly get the A1cs down with injections and I will step aside and let the MDI experts take over.
     
  11. sooz

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    If he is somewhat interested in the omnipod ..which to me is less invasive somehow than a tubed pump, then you could get a trial pod for him to wear to see how he might tolerate it. There is absolutely nothing wrong with mdi..we did levimir and novolog and that is another way to go for sure..im glad he was able to express his fears to you in such a clear way.
     
  12. Sarah Maddie's Mom

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    I'm sorry that your son read this and is letting the notion of a pump "emptying" into him dictate his care options. Insulin pumps are safe and reliable and can make a teenager's self-care vastly more convenient.
    IMHO, the endo did your son a terrible disservice.
     
  13. MountainJam

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    As we all know there are no guarantees of anything in life. There are times with both of our kids, D and non-D, that their fears of things with very little to no chance of ever happening interferes with their decision processes. We try very hard to make them understand that, yes, things can and sometimes do happen, but living in fear of them is not the right answer.

    Researching D on the Internet,much like researching anything else on the Internet, can take you to a whole bunch of places that may or may not have accurate information. Unfortunately many people see something on the Internet, so it must be true. The Internet can be a valuable resource, but the trick is to be able to filter the good from the junk

    As for Omnipod, DS would not have a pump if tubes were the only option. He made it clear from the start that he wanted no part of the tubes and would stay MDI if tubes were his only other choice. We have all been quite happy with the Omnipod this point, but everyone has to find the right answer for their own particular circumstances.
     
  14. joan

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    I know it is rare( pump malfunction) but if my son had that fear in his head it would be hard for him to get over it quickly. MDI is a good first step towards pumping. The logic is the same and when he gets sick of all the shots he may opt to try the pump. My son did not want a pump and only started wearing his after going to a d camp and seeing almost all kids on pumps. The kids would joke with him about shots. Now he wears a pump but also gets lantus so he can take it off whenever he wants and not worry about highs.
     
  15. BrokenPancreas

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    Joan,
    How old is your son?
    What pump is he on now
     
  16. joan

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    My son is 17. Because I wanted him to have a pump he got one about 4 years ago. He really did not want one and I was sick of him getting the shots. He tried omnipod, did not like, so then I convinced him he would like animas. Twice at night it came out and he woke up with large ketones, that was it , never again. This past summer age 16 he was a counselor at a d camp and came home wanting his pump ( YEA) but not for at night. Now 8 months later he really likes the pump, animas. He still gets lantus so does not wear it to bed and takes it off for all sports.
     
  17. Christopher

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    What about trying a Humalog/Lantus regimen?
     
  18. Flutterby

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    I've NEVER heard of a pump just dumping it all.. if it happens, it would be extremely rare.. there was a think with animas dumping all its insulin, BUT that was USER ERROR while priming..

    Pumps have many safety features, sure they can malfunction because they are machines, BUT they do have multiple safety features to help keep that from happening.

    There are 100s of kids on this board on pumps, I can recall 1, maybe 2 stories where the child ended up going to the ER because the pump was acting funny and to much insulin was delievered, but I don't know if it was user error or a true malfunction.
     
  19. Annapolis Mom

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    I am very impressed that your son was able to tell you about his fears. You must have a very good relationship with him.
     
  20. denise3099

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    Um, that can't happen. When a pump malfunctions it stops giving insulin, not emties the resevoir. YOU could MAKE that happen by overriding safety features, priming the pump while still connected, etc. but that is extreme user error, not pump malfunction. Even the recalled quicksets that were giving too much insulin, were giving too much, but not emptying the res. If somebody has any research to indicate that any pump malfunciton could cause the res to entpty, I'm happy to take this all back, but I've never even heard of this as a possibility, other than, as I said, users not using their pumps as they should. The mm even has a max that can be delivered that you can set at whatever amt.

    At this point, I would do some research and say, "look, I've done research and contacted the pump companies and they say that has never happened and can't happen unless you specifically do it yourself." I'm not saying that he should go on a pump--I'm just saying this should not be a consideration. Pumps can be dangerous, b/c they can stop delivering insulin for a variety of reasons, not b/c they can empty out their res.

    He can try out the omnipod, wear if for a few days, or he can switch to mdi, with which many many many ppl have enomous success. Getting a pump isn't your only option at all. But your doc shouldn't have even said this was a possibility without real evidence.
     

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