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Hoping we made the right decision

Discussion in 'Parents of Children with Type 1' started by ScottB, Jan 25, 2008.

  1. Boo

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    Marsha,

    I agree with many things you say, but disagree with some other points. The pump is most certainly not a cure-all, it is just another method of delivering insulin. For most people, it can provide much more accurate dosing. You are smart, clever, and resourceful enough to have figured out ways to do this on MDI. That's great...more power to you! :cwds:

    On the other hand, you say that you didn't want to go on the pump sooner because you wanted to learn how to fully control her on MDI. While I am certain that you have learned more in a short time than many parents do in years, I also think that 3 months isn't long enough to have REALLY gotten a grip on this. Please don't take that wrong. In our first 3 months, we never saw a number under 52 or over 295, and that was on NPH. I'm not trying to get into a pissing contest about this :), but I just think that you will find that in some ways it doesn't get easier as time goes on. There is a good reason why many endos want patients to wait a year or so before considering the pump. When MDI is working well for them, there really is no reason for it.

    I completely agree that the pump is not for everybody. I think what bothers me is that you obviously are not fully on board with the pump, and therefore IMHO not allowing it to show you it's full potential. I too was very skeptical at first about a machine doing the work, calculations, etc., and wanted to try untethered. Now, I don't feel that it is necessary for us (though I don't knock others who do...it just kind of seems like more work now, and also seems that it might be more confusing when it comes time for basal adjustments).

    I think you should go to work for a pump company in their research & development department. We need to put your ideas and first hand knowledge to work for all of us so that the pumps can be even better in the future! ;)
     
  2. twodoor2

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    Even with untethered it still does all the calculations, but I have been doing that all along as well, and my calculations come very close to the pump (it chops off the hundredth and I round to the nearest hundredth). I now trust the pump calculations because I now understand why it's doing some things. That's the good part of using the pump, it's opened my eyes to other things that I was doing incorrectly, like not giving a long enough DIA, and I think chopping of the hundredth unit without rounding (as the MM does) is better as far as controlling hypoglycemia.

    Thanks for the kind words, and yes, I know I've only been at this a short time, but I just wanted to give my input to those still on MDI to not feel pressured to change if they don't need to. Even if you're not getting the best control on MDI, if you truly understand the calculations behind the pump, and you can give smaller than half unit doses, it does help substantially to control blood sugar numbers.

    Diluted insulin is also another option for those of you that have highly sensitive children.

    I wish I could show everyone what I did in my spreadsheet to emmulate the calculations of the pump, it's really interesting, and I also compute other statistics that the pump doesn't provide (the software probably does though). I think understanding standard deviation in combinations with the % of corrections of the total daily doses has been really helpful as well.

    I have had so many parents come back to me and say, "what is IOB, ISF, standard deviation, etc. . . " It doesn't take a math genius to understand these things, but it is vital to know DIA, IOB and ISF when you're doing dosage calculations, especially for grazers.

    Oh well, I'm done with my shpeel.
     
  3. wilf

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    One of the hardest things (I am still working hard to internalize this) is not to assume that what's right or what works for one child or family will do the same for another.

    There are some for whom pumps are a great method of insulin delivery, others for whom they are not. We need to be careful when describing our way of doing things, that we are not (implicitly) seeming to put down the methods used by others. I've noticed that some pumpers can become somewhat preachy when extolling the benefits they've experienced while pumping, but others do the same thing when talking about their preferred methods. And I'm sure I've fallen into the same trap more than once..

    There are many things we can learn here (and elsewhere) that will make the diabetes easier to manage. I learn new things almost every day, and am always looking to learn more. But at the end of the day I recognize that despite all I have learned there is much more to learn, and that while I am learning things that are useful to me they may not be useful to others. We are all so different and each of our children is utterly unique.

    I thank my lucky stars every day that DD's diabetes is manageable. I know that it could be much harder, and that many families (esp. those with younger children) have to contend with challenges I can't even begin to imagine. I salute all of you in your ongoing best efforts to manage your childrens' diabetes.
     
  4. sammysmom

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    Everyone is entitled to their own opinions and it should not matter if they are a new DX or not. Marsha thinks that pumps could be greatly improved and there is nothing wrong with that thinking. What does it matter if her child is newly dx or not? Obviously Marsha has a strong math background and this is a big benefit to managing diabetes. I do not think it is fair to say that she is being insulting, in fact I think it is insulting to say something to the fact of "she has not been at this long enough" to even know what diabetes is really all about. I have been at this a long time, my son was dx as a baby and was on every insulin imaginable, lente, ultra, regular, humalog, novolog, nph, diluted....does that make my knowledge or opinions better than hers?? of course not. My expierences may be different but that does not mean that Marsha needs to have appreciation for pumps just because she never had to use the older insulins.

    I know many people that do not have a problem with high or low bg (and they are obviously out of the honeymoon stage), these people have no trouble getting themselves or their children to a1c's under 7, sometimes low 6's. Then I know people who work their butt off for an a1c under 8. These are smart people and do everything in their power to get it right. A very good friend of mine that I speak to on another board is one of these people. All these kids are different and respond to differnt treatments and stratgies.

    So marsha thinks that pumps could be improved, so what, maybe she has a point. Lets look at all sides instead of getting upset that her opinion did not agree with others.

    I had someone tell me the other day that the cwd is becoming kind of like a clique. If someone does not agree with an opinion then they are attacked. Pumps are being pushed a little bit too much when the poster is asking for help on MDI. NPH is being bashed when it is actually working for someone. People are being scolded for telling a different side to a story (lets take the A+ medical thread for instance). This is a forum for sharing our success, failures and exchange of information.No one should be scolded for an opinion. If you are offened by something that someone says then just tell them rather than saying "you are only 4 months into this whole thing". If something really offends a person, maybe that person should dig down deep and ask themself why they are offended by a comment on a message board. Is there a bit of truth to the comment or are we offened because someone else is actually having an easier time with diabetes managment than others.

    I am not saying this to make anyone mad. I am saying this because I have had a lot of people tell me about problems on this board lately. I like this board and it has been a lifesaver to me at times. This board is great when it all bands together (take the cgm insurance problems for example) but lately when an opinion differs from the group, it can become downright nasty on here. I have seen it happen to another board and would hate to see it happen here.
     
  5. Seans Mom

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    Not giving him so many shots has nothing to do with what his arms,legs or butt look like. It has to do with a 4 yr. not liking them along w/ the 8-10 finger pokes everyday. If your daughter is not bothered at all, I think that's great for both of you. I do not jab my son and I have no idea where you came up with that idea. I have read my copy of "Think like a pancreas" and John Walshs' "Pumping Insulin" and continue to thumb through from time to time. Both great books. Still don't know what they have to do with my comment about being impressed with how far the technology has come. If you prefer MDI, I say more power to you. I don't understand your contempt for those who prefer the pump. I never said or implied that the pump was the answer to b.s. "rollercoasters". My reason for the pump has nothing to do w/ that right now really since Sean is still honeymooning. But I sure could use that .025 basal rate and .05 bolus rate that the Animas can offer since .25 units will drop him 144 pts. He uses on average 5.5 units TDD. And the different basal rates can help me keep him from dropping through the night w/o adding yet another shot by changing to 2 Lantus doses or Levimir. According to my endo, CDE and pump educator, these are all very good reasons for him going to the pump along with hypo unawareness.
     
    Last edited: Jan 27, 2008
  6. twodoor2

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    I just wanted to say one more thing, again, I really hope I don't offend (but I probably will). I just can't keep my mouth shut about this, but the other reason I waited to get control with MDI before I went on the pump was because if something ever happened, and she couldn't use her pump, we wouldn't be lost.

    I think people are just so incredibly dependent on the pump that if they ever had to go back to injections, it would be horrrific, even if it was just for the weekend. I don't know about you, but relying on something 100% so completely like that makes me feel squeemish. It's bad enough that our children have to rely on insulin to survive, and we have no choice at the moment, but to also rely on the delivery mechanism so completely is just too scary for me.

    As for the untethered method, the originator, Dr. Steve Edelman, goes on and off his pump so he's not tied to it 100% of the time. He can go off it every weekend if he wants to. I might do that later with Elizabeth after we get used to it. She can go swimming, take a long bath, have a site failure, etc. . . and she won't risk DKA as long as she takes her insulin to cover food.

    Another thing that bothers me about the pump is that the kids must be connected 24/7, and that is a bit disconcerting to me, although, I know people get used to it. Dr. Edelman can handle shots as well as his pump, and I think that's great. I also don't want to risk DKA, and site failures do happen (they already happened twice to us on the saline trials!!). I can still raise her basal if I need to, and although I cannot really lower it, I keep a close eye on the basal level (more so than any other factor in her dosing).

    However, I think that the pump is a wonderful invention and it has saved so many children. I am so grateful that we have Lantus and I don't have to deal with NPH. That being said, NPH works great for several parents, and I have mentioned that in other posts before.
     
  7. sammysmom

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    Sounds like the animas pump is just what you need! I am glad that you will be starting it soon. It is hard to deal with MDI when the needs are so small. Like you, when our son was dx, his sensitivity was 450:eek: I remember how hard it was to even correct him. If the pump was an option when my son was dx, I would have put him on it for the simple fact of tiny doses. I am glad that we were introduced to diluted insulin in those days!

    4 is a rough age to be dx. They are young enough to still listen to their parents and old enough to hate something and let you know!
     
  8. twodoor2

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    I have absolutely no contempt whatsoever for those who prefer the pump. If I thought that, why would I put my daughter on it??? I even said that the pump is a must for very insulin sensitive children.
     
  9. BlessedIAm

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    I hope you are all doing well with the new pump.

    Just wanted to add that my DH has been diabetic for 17 years and has been resistant to getting a pump. About 2 years ago he got tired of listening to me and his doctor talk to him about getting a pump so he decided to agree to it only to get stopped by "red tape" and because he wasn't all that gung ho about it he basically just gave up getting one at all.

    Last February our DS was diagnosed with diabetes and almost immediately he said he wanted to get the ball rolling with him getting a pump because we both agreed we eventually wanted to get our DS on a pump and we liked the idea of DH being a good role model for diabetes care, etc. DH has had his pump for a month now and LOVES it. I've resisted rubbing it in but I know he wishes he had gotten it sooner. Just about every day he has something positive to say about his pump.
     
  10. Beach bum

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    Wilf,
    You took the words right out of my mouth.

    Perfect example for us. Abby is on the pump. It has worked very well for us. Her teacher at school has had D for 39 years, was very excited to go on the Pod. She had been on Hum/Lantus. I guess the Pod doesn't handle Hum as well (???). Anyhow, she was put on Aprida for her insulin start. She ended up having an allergic reaction and ended up in the hospital:eek: So, she said to me, I'm going back to MDI. For her, she had really good numbers on MDI (she is incredibly dilligent in her care), and wanted the Pod for a break from shots...

    So, it's not a matter of what method you use to help manage D, it's how much time and effort you put into it that matters.
     
  11. thebestnest5

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    Nicely put.

    We did great on injections and I respect those who choose to stay on injections. I don't feel like we would be lost mathmatically or BG number-wise if we went back to injections. Liv didn't complain about the shots. I talked to many people who'd done well on injections. I have a brother that is still on injections and chooses not to pump and I don't think pumping would suit his lifestyle as well as injections do at this time.

    Dh and I used to talk about the choice of pumping when Liv was doing excellent on injections. At times, we were really against using the pump for Liv. We talked about her being attached 24/7, relying on a machine, site failure, DKA, tubing issues.... The nagging question that I had was "What if pumping is truly better?" That came from those who posted and really talked about how much they loved the pump. I decided that we had to try it. We could always go back to injections...but what if my DD would feel that pumping was great (like I had read on here time and time again).

    We told Liv that we would pump and she could go back to injections if she chose. We set a time frame of 6 months to really try it and get past any pains of change.

    We knew we could not expect better control on the pump than Liv had on MDI. Our highs and lows were really not from miscalcuations...cold viruses can be evil and growth spurts can be a dosing challenge.

    For us, it was the freedom that an 8 year girl could have. Just a month before she was dx'd she could walk in the kitchen and grab a banana or crackers or anything any time she wanted. Injections changed all of that. We wanted her to have that freedom. Emmasmom once posted about being able to eat more like a child (when we were on injections) that really "hit" me. Liv always had to ask to eat...before dx we had healthy fruit on the table and some snacks in the pantry to grab. I had to draw up her shot(several times a day). It wasn't the pain...it was more than that...it was the time out of the day...yes we could do the calculations...but we took a tad longer doing those things. The psychology of food means poke (not every poke will be painless & a lot of kids will stongly remember the pokes that are not painless). Using the pump has given Liv so much more of her childhood backin so many ways--she feels that!

    If I sound pro-pump...I guess you could say that I am because I see what it's done for Liv. I really thank those on the board that talked(preached;)) about the pump--it pushed me to want to see if my DD would be one of the kids that it really helped.

    It wasn't about the math--I am married to a math genius--and I'm not so bad myself.;)
    I think that we would have been fine on injections...but the pump has that X factor for us. It takes away anxiety (anxiety that we didn't even realize was there with every thought of a snack and poke of an injection (painless or otherwise). I ate, slept, and breathed D for months after Liv was dx'd---The pump helps give the family a break from eating, breathing, sleeping D. I wanted life to go on...beyond...reading Ragnar Hanas, John Walsh-- D is such an in-your-face-disease. For us, it's great (for us) to have the pump/cgm to take it out of our faces and still have great control. (For us), it was the psychological impact that comes with injections and I could see it it Liv. I wanted to focus my time on Liv and her sibling and not as much on the disease Liv is living with (does this make sense?)

    If others feel that pumpers are putting down injections that's not it...I've been both on this board. Caring people want others to know that there can be an X factor out there with pumping and a lot of people and kids feel it. BTW, it's not just on this board, I talked to a neighbor that has been dealing with D for 50 years--with no complications. He told me to get Liv on a pump! He said, "I've been dealing with this $hit for over 50 years and the pump was the best thing that I could have done for myself regarding my diabetes..." BTW, the guy I just quoted is an engineer-MENSA type--he's not mathmatically challenged and he reads about D.;)
     
    Last edited: Jan 28, 2008
  12. evinsmom

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    I'm almost afraid to enter into this, but I wanted to share what pushed us to a pump/pod.

    Both my husband and I are engineers. We know math (i.e. IOB, ISF, DIA and even standard deviation), and we did all the calculating and automating you can imagine to "get control" of my son's numbers. I also did extensive research on the accuracy (or lack thereof) of syringes to figure out how to make these things work for us (you would be amazed at the number of studies done on this as well as the accuracy of pens and pumps). And those first 4 -5 months we foolishly thought we had it all under control and even managed to pat ourselves on the back a couple a times a week. Oh, how silly we were.


    [​IMG]


    It wasn't until I saw the above graph in Think like a pancreas by Gary Scheiner that I realized what part of the problem was (along with growth hormones, sickness, stress, and every other Tuesday…or is it Wednesday:rolleyes:). My son's basal rates are now very similar to the one in the above graph. And it has made a world of difference. You can't do that with Lantus or even a split dose of Levemir.

    Of course the freedom that everyone has mentioned has also made a world of difference and my son – who is only 4 – says he never wants to go back to shots. But as "knowledgeable" as I'm told I am on the management of this disease, I still have no idea why my son's blood sugar last night went from a 160 at 12:00 midnight to 392 at 3:00 am.

    As for the technology...again, I'm almost afraid to enter into this. As someone who has worked with leading edge technology for many years, the pump/pod are a fantastic piece of machinery that does a great job. But, the software and support pieces that surround that technology stinks. I think Amy Tenderich said it best in her Open Letter to Steve Job. Because I have worked in a similar field, I understand why this is, but it doesn't change the fact that these tools can help us more. But that is changing for the better as well.

    To go back to ScottB's original question, I think you'll find that you made the right decision. But I must tell you there were many times during our first 4 -6 weeks that I wanted to toss those pods out the window, but I'm so glad I did not. I hope it works out for you and your son.

    So that's my 2 cents.
     
  13. sammysmom

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    I am glad that you posted your opinion, it is great to see all the different views. When one becomes almost "afraid" to post their opinion than maybe others should look at the reason why. This board is not here for everyone to agree on everything, but to share information on a mature adult level.
     
  14. Flutterby

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    I hear you when you say that you want those that are on MDI to not feel pressured to go to a pump.. no one is pressuring anyone.. everyone can choose the method they feel most comfortable with. Whether its Lantus, Levimir, NPH, or pumping that is everyone's personal choice.. but when you are telling people

    It seems as though you are calling people dumb in a roundabout sort of way. I knew about DIA, IOB and ALL calculations before moving onto the pump, that was a criteria before doing so.. i think ALL endo's make sure you know this before moving to a pump....Kaylee was also SUPPOSE to wait a year before moving to the pump because they wanted us to know what to do if something happened. We HAVE had to go to lantus and injections for the weekends.. we made it through fine..

    I think this is a totally unfair statement...
    I feel like (and its just my opinion) that you think those that have moved onto a pump are 'copouts' or lazy or something.. I feel insulted by most of what you are saying..

    you are whole heartly entitled to your opinion...and to the same respect that those on MDI don't want to feel pressured into going on a pump ~which they most certaintly shouldn't be pressured into~ those of us that have chosen to go onto a pump to help manage our child's diabetes shouldn't be made to feel as though we are taking the easy way out.. that we don't have brains and need this little machine to do everything for us..
     
  15. momtojess

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    That about sums it up for me.. I dont think Marsha's intention is to come across making those who chose pumping and love it feel inferior,stupid, or lazy (or atleast I would hope it wasnt intentional) yet I felt the same way by the things said.
     
  16. twodoor2

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    No, all endos do NOT make sure people know about these things, maybe in your case, but not everyone. I know people on the pump that are unaware of these things, and have them programmed in by the pump trainer/endo, whomeever, and just "go with it." Maybe in your case, but not everyone else's. You're describing you, and your individual experiences, but I know parents that really have no clue, even on the pump. On this board, I have read time and time again how parents are terrified because the pump broke down, and they don't know how to dose for shots as well.

    Again, my intentions were not to call people stupid, or make people feel dumb. I think my comments have been taken wholely out of proportion, and should not be generalized for the entire population of type 1 diabetics or their parents.
     
    Last edited: Jan 27, 2008
  17. twodoor2

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    I agree. The software, or algorithms used by the pump (in our case Medtronic) is extremely easy, and I think it could be enhanced a great deal. I'm not just talking fancy screens, or cool looking buttons. My example is as follows. DD had a blood sugar of 111 with about .4 units of IOB left. With an ISF of 150, she is sensitive and that is a large amount, even provide a warning, something!!?. If I gave her all the dosage that the pump recommended, then she would go hypoglycemic. Therefore, I lowered it. I think there should be some type of IOB limit/range vs BG value, or enhancement made to avoid this. John Walsh even suggests that that every 1 in 9 boluses, you will over bolus with the pump. However, that is not built in, nor is there anything built for additional variables like exercise, stress, etc. . . The pump does it's very simplistic calculations, and off you go. Insurance spent $6000 on a basic calculator, and it peeves me. For that price, I really think the software is lacking. Yes, I am the brain behind the pump, and I like to make the decision to change the dose if I want, but some people just give whatever the pump says, and don't blink an eye after pressing "ACT." I look carefully at every dose, as I'm sure many others do, however, if the pump can help to make that dose more meaningful, that would be optimal.

    I'm not afraid to post this opinion, I think it helps to understand that the pump is a simplistic calculator that delivers insulin in an archaic manner (I'm sorry, but the hardware is lacking as well). I think there is substantial room for improvement. Of course, you're not selling as many pumps as ipods, so there's probably no motivation. I know all the pump people are going to throw stones at me for this post, but it's my opinion, and take it for what it's worth.

    The idea behind the pump is wonderful and is great for many people (mutliple basals, programming all the variables to provide the calculations, no shots), but I think there is much to be improved. For heaven's sake, this is the 21st century!
     
    Last edited: Jan 27, 2008
  18. Flutterby

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    Like I've said before, the pump ONLY KNOWS what you've put into it.. that if you are putting in 20 carbs then she actually ate 20 carbs.. so if she's 111 with .4 active, then its NOT the pumps fault, its the operators fault for not correctly counting carbs...

    I find this hard to believe.. If an endo is willing to put you on a pump and not show you how to use it.. or how to program it then they shouldn't be an endo. I don't know of anyone, on this board or otherwise that don't know the basics about the pump.. Yes, there ARE parents out there that don't care.. but those parents wouldn't be given the go ahead for apump without proving that they are capable of doing it..

    when you are pumping for years and years (not weeks) the dosage changes quite a lot and there for its ONLY SMART to call your endo and 1, let them know the pump is broken down and you are waiting on another one.. and 2, you need help to figure out the dosages in the mean time.. Lantus works differently from novalog, levimir is different than lantus.. and NPH is different as well.. I would think it would be highly arrogant to not call your endo if the pump breaks down to get some 'ideas' of where to start your dosages..

    if you dislike you 'calculator' so much why don't you call MM and have them take it back, they have a 30day trial period on taking them back.. of course you'll be stuck with any infusion sets you've bought already.. but at least your insurance will get their 6k back...
     
  19. Flutterby

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    SCOTTB--- I'm SO SORRY for your thread being Hijacked.. I apologize.. didn't mean for it to happen..

    I hope Justin is really liking the pump and that you've gotton the infusion sets straightened out.. update us on how he's (and the entire family) doing:)
     
  20. twodoor2

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    Again, the problem with the incorrect amount and the carbs in your first point is not true. Diabetes blood sugar numbers are not always predictable at the next dosage, so it should provide a warning for BG vs IOB left, but I see you're extremely angry at me and whatever I say is not going to make a difference.

    . . . and there are many endos that shouldn't be practicing, so you're lucky to have yours, but others do not give good instructions or deal with their patients correctly.

    Waving the white flag.
     

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