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Pump Start

Discussion in 'Parents of Children with Type 1' started by danwh72, May 8, 2014.

  1. danwh72

    danwh72 Approved members

    Nov 8, 2013
    We had our first pump class on Monday. It was a little stressful when our little guy decided at the class that he was, under no circumstances, going to try an infusion set. We had been able to get him to try one a couple of months ago, but now that things were live, he was having a change of heart. The spring-loaded applicator was causing him some concern. It wasn't until after the first class, when our nurse showed him the infusion set with the metal applicator that can be inserted by just pushing into the skin that he was game. While it was uncomfortable for a bit, he did well for 48 hours. Tonite after the bath, my wife and I did our first change. Made sure the skin was clean, and the reservoir change went seemingly smoothly (good thing, though, that it's saline for the first week). Our little guy happily went off to his room to draw a picture of his new pump.

    We came around a couple of minutes later to give him a finger poke, and his Levemir for the night. Something must have moved, and his infusion set pulled out. He tried to poke it back in, and ended up stabbing himself multiple times. I haven't seen him cry like that for a long time. For the first time since diagnosis (about 14 months) he pleaded that we take his diabetes away. He said that he wants so badly to be like the other boys. I found with our older son, that age 7 was a real coming of age year, where there is a different understanding of their place in the world. Needless to say, he doesn't want to do the pump. We opted to give him a break for the night, and we'll try another infusion set tomorrow. What a sad night...

    It's only been a few days, and our feelings are mixed. Do we get used to the tubes? Is the end result that he will ultimately feel more "normal" with the pump than without? I had read that there is a transition period. I guess I had been hoping that the pump would have made it all go back to normal, but it's a little like we are being diagnosed again.

    I suppose that he can opt to do the pump later. We do want to give it the proper try. We have had a very hard time keeping his numbers in check, and we were hoping that the better control with dosing on the pump would help.

    I have been a longtime lurker of this site. I review it daily, and it has really normalized a lot of this for me - knowing that there are so many others like my family.

    Father to a son, diagnosed in February 2013 when he was six. We had been on NPH/Rapid/Levemir (no nurses at public school and no dosing from the school here in Canada) and are transitioning to the Metronic Veo.
  2. rgcainmd

    rgcainmd Approved members

    Feb 6, 2014
    My daughter will start pumping with the Omnipod in June, so my "two cents" is not based on actual experience, but...

    Have you considered the Pod? Going tubeless was a deal-maker for my daughter, so this might be appealing to your son (or at least be something he'd consider tolerating). No infusion sets per se, so no separate infusion set insertion to remind him of his bad experience. You and your son can watch videos of kids (some of them quite young) having their pods changed on YouTube. The kids seem to tolerate it quite well. And you could switch from your current tubed pump at little additional cost with their "cut the cord" program. Just something to consider...

    Good luck with whatever route you end up choosing, and I hope things turn around soon for your little boy.
  3. MomofSweetOne

    MomofSweetOne Approved members

    Aug 28, 2011
    Are you using the Sure Ts? My daughter says she can feel them if she doesn't tape the site, so I would definitely recommend doing so. We use Hypafix. We've also used Mios (had problems with kinks) and Silhouettes (switched because of amount of tissue damage). My daughter says the Sils hurt the most.

    It's too bad they're making you do saline for a week. That's all the hassles of pumping without any of the benefits. I will never forget the smile on her face as she bolused for an apple without a syringe on the way home from pump start.

    My daughter is currently wearing the pod for the spring/summer, but she actually misses the tubing and having the pump attached. She doesn't like having to search for where she last left the PDM when she's hungry, and she likes having an attached time-piece. I would expect soon tubing would become just another part of wearing something.

    Also: my daughter was emphatically opposed to pumping her first year. When she changed her mind, she's never looked back.
  4. Sarah Maddie's Mom

    Sarah Maddie's Mom Approved members

    Sep 23, 2007
    I think it's normal to expect that any new device - a pump, a watch, eyeglasses, braces etc will take some time to adjust to. Meanwhile some things to consider. How long is your son's tubing and how are you "storing" it? For a young kid you want the shortest possible tubing and a pump pouch or pocket undershirt to store the pump and keep the tubing from catching - door knobs are the worst offenders :p

    For years, when doing a site change, I'd let her watch TV and I'd count down, 3,2,1 and then she'd let out a scream. For whatever reason screaming distracted her and perhaps let feel that she was in control. The second it was inserted it was all over. After a little while the "scream" became a yelp and then she gave up on it all together. '-)

    Last bit - I don't believe in negotiating with kids around issues of medical necessity. I'm all for being sensitive to their needs, listening to their concerns and looking to mitigate those concerns but some things are non-negotiable. I would caution against letting a 6 year old nix an entire group of infusion sets before you even get off the ground pumping. I highly recommend getting your hands on as many different sets as you can and trying them out on your SO and when you feel comfortable doing it letting your son see you put one on yourself or your SO. People pick infusion sets for many different reasons - adhesion, allergy, body type etc etc you may find that you need to use one with an inserter and you do not want that battle of wills on your hands.

    Good luck!

    PS - my kid says she feels like a limb is missing when she's disconnected. :cwds:
    Last edited: May 8, 2014
  5. andiej

    andiej Approved members

    Dec 30, 2013
    Oh i'm so sorry you aren't having a positive pump start. We are one week into pumping insulin using an Omnipod pump. At the first class my 10 year old got tearful about putting it on but the DSN was brilliant and she did it on herself first and once he saw how quick it was stick it on press the button it's done he was fine and said it didn't feel any different to a finger poke. Whilst he was upset i felt very tense and worried things wouldn't go well for us. one week in and he wouldn't give it back. I hope you get back on track and you have a positive pumping experience as it was the best thing we did.
  6. mamattorney

    mamattorney Approved members

    Apr 9, 2013
    We had HUGE issues with infusion set adhesion when my daughter started on a pump. We learned we have to tape them down from the start because they were falling off within hours otherwise. I think she may have drier skin than most and so they just don't stick well. You could try that.
  7. shannong

    shannong Approved members

    Sep 15, 2012
    I feel that with anything in life, kids need to learn that things don't always go smoothly at first, but that you can and will overcome obstacles. I would not in fact want to give up because of one unfortunate incident. I think that my lead to a lingering feeling that the pump is not a good thing. I think the only way to get over that is to have a positive experience. My son uses the steel cannulas and we always tape over them so that they do not accidentally rip out (which does seem to happen in no time at all if I don't tape over the site). You have medical reasons for wanting to try the pump, so I would stick with it. There are always issues to work through in the beginning and you will get through them. They definitely get used to being on the pump. I have seen my 8 year old stumble half asleep to the washroom and have watched him just on instinct grab his pump before he gets up. It's just like it is part of his body now.
  8. danwh72

    danwh72 Approved members

    Nov 8, 2013
    DS was better this morning. We are using the Sure-Ts, and both my spouse and I were surprised that he preferred those ones best, as having the steel cannula seems that it would be more uncomfortable. He let us have a go at it this morning, and we were able to set it up again. He is now finding them uncomfortable. I was able to convince him that we would try the plastic cannula infusion set this evening. At least we are getting some practice priming the pump.

    I wholeheartedly agree that medical necessity trumps six-year old preferences, however, in a pump start class where the little guy has dug his foot in, it was going to require an even more unpleasant scene to have gotten him to try the regular infusion. I imagine that everyone here is just as impressed with their own, but I am always floored by the maturity that he has had through all this, and he does come around. I do find that if we are gently persistent, he can almost always be persuaded (expect, of course, when we want to cut his hair. Then, it's an epic crisis).
  9. Austins mom

    Austins mom Approved members

    Jan 4, 2013
    My son was 6 when we started pumping using the contact detach (steel Needle with the one touch ping), we have never had a set come out. Hes active in sports (even football) He loves his pump and would never give it back. There was another learning curve with it of course but this is the closest thing to "normal" as we are gonna get. Believe it or not, when I see him out there playing with his friends on the soccer field, I often forgot he has something attached to him. Its his new life and we have all accepted it. The pump is a miracle invention to our family!
  10. Cheetah-cub

    Cheetah-cub Approved members

    Feb 18, 2014
    We just started Pumping with the OmniPod since March 26th. My 10-year-old loves it.

    At our Pre-Pump class, we were introduced to all the pumps and the different types of infusion sets. At the end of the class, all the kids were offered a demo set to try on, (just the infusion set or the pod). My 10-year-old decided to try the steel needle infusion set. She was uncomfortable on the car ride home, and finally a few hours later, she begged to take it off, she said that it was hurting her. She was supposed to wear it for 3 days. I let her remove the set.

    So, maybe try a different kind of infusion set?

    We do love our OmniPod's automatic insertion feature. You never see the needle itself, and it is fast. My daughter said that the insertion hurts less than an injection.
  11. susanlindstrom16

    susanlindstrom16 Approved members

    Nov 29, 2012
    My daughter started pumping last October. Too say she was not a fan of the infusion sets (we use inset 30) is a huge understatement. My daughter (just turned 6) has a flair for the dramatic and our pump start was no exception. It was a bad scene. There was screaming. I think the CDE wanted to cry, lol. Oh lord it was crazy. BUT we got through it. These days, I will not say site change time is a fun time at our house, but it happens every couple of days (without screaming) and we move on. You can ask your doctor to prescribe numbing creme, that has been pretty helpful for us. Also, she likes to clean the site with alcohol and let me know when she is ready. I think its about her having some control.

    I might steal the thing about letting her scream though, she would probably be all over that!

    Pumping has really been worth it for us. It is like being diagnosed all over again in a way, but once you get past the initial start phase it gets better. She hasn't had any problems with the tubing.
  12. mmgirls

    mmgirls Approved members

    Nov 28, 2008
    I have always told my girls it is OK to cry and even scream as long as the Dr or Dr Mommy can get what needs to be done, done. For my oldest it is not about pain, it is about control. And I say that knowing how different she does act when it does hurt, sometime you do just hit a nerve ending. It has been confirmed when I did try to use elma cream with site changes she would still act the same way, I could not convince her that it would not hurt, it was anxiety not pain that she was dealing with.

    A nugget of information she came home with from her 1st D camp was that, if it hurts that means it is healthy tissue! I guess sort of internalizing that the pain from a shot or infusion site change means that you truly are keeping you body healthy.
  13. StacyMM

    StacyMM Approved members

    Oct 22, 2010
    Well, I'm probably different than most people, but we decided to delay pump start based on DD's reaction. She was 4 when we first tried pumping. We ordered the pump, set up training, showed up with the manual read and our daughter ready...or so we thought. We went through training, the other kids all offered to put on sites first and had no issues, the trainer did a site on herself...and my daughter hid under the table the entire time. When it came time to start her, she freaked. Screamed, cried, tried to crawl under a chair, begged and pleaded and kept shrieking "no no no." She was terrified. We put everything away, thanked the trainer, consoled DD and went home. We didn't try again for two years. We could have forced it. Held her down. Put in the site. Keep at it. I couldn't do it, though. I grew up as a sick kid and had a phobia of needles and a fear of doctors. So much so that I needed therapy to get over it before I could have kids. I remembered that terror and sense of powerlessness and I didn't want to start DD on that path, especially with a disease that required shots for the rest of her life. And I didn't want to add dread and fear to treatment. I know our situation is unique and that most parents don't have the same history or the same response in their kids. And I'm not suggesting that anyone else follow their kids lead on this. I'm very much a 'this needs to be done so we're doing it' type of parent but since there are options, a pump isn't required, you know? At 6, she went willingly on the pump. She changed her mind over time and we quit pumping when she turned 8. She started pumping again at 9. I'm just sharing this so that you don't feel alone if you decide to not push the pump. It's a great option for many people but it's not for everyone and it's not always the right time.

    Good luck! If you decide to stick with pumping, I hope the transition gets easier and all is well soon :) If you decide not to, don't beat yourself up - just give it time and try again :)

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