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'Things I wish I knew when starting the pump'

Discussion in 'Parents of Children with Type 1' started by destea1, Jun 8, 2012.

  1. destea1

    destea1 Approved members

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    We're going through training next week on our new Animas Ping for Sisi (4yrs old) - the start date is June 22nd- we're very excited and a lot nervous at the same time. I know it's another big learning curve.

    That said... I know when we first started and have been doing the MDI journey there are many things that were "DUH!" moments along the way that seemed to straight forward that never occurred to me that I wish someone had shared with us.

    So.. that said... When your child first went on the pump (or you yourself did) what helpful tips/tricks do you wish someone would've shared with you while you were getting going? Things that aren't crazy indepth just... something that helps you transition and makes life with a pump that much cooler?

    Any and all info welcome, I'm diving into the manual and workbook today. Thank you for all of your insights in advance :) I'd be lost without this board even if I don't share a ton, I read!
     
  2. emm142

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    If a type of infusion set repeatedly comes out kinked, try a new type of infusion set! I'd really recommend the steel ones for beginners - they don't kink, eliminating one possible problem. I kept going with the infusion sets I first tried for ages, and almost quit the pump entirely because I didn't realise how easily the issue could be resolved.

    That was the big one for me. In terms of the more complex features of the pump (extended/combo boluses, temp basals, etc.) try them at first if you like, but don't worry if you don't fancy using them for the first few months. All of that will come with time. The things you want to get sorted quickly are the I:C ratio, insulin sensitivity and basal rates.
     
  3. Turtle1605

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    We have not been pumping long (only about 3-4 weeks) but these are the things that pop out in my mind...

    1. Be prepared to mess up a couple of times when you change the infusion set, every time you change it...for the first 3-4 weeks at least. I have had a couple of flawless sets but I've messed up several times, too. You most likely will have plenty of sets provided when you start, but you might need to reorder sooner. :)

    2. You can put more insulin than you need in the reservoir and then draw the left over insulin out of the old reservoir into the new reservoir when you change them out...this will save a ton of insulin. I can't imagine how much I've wasted already...until i figured out I could do this and it would be okay.

    3. Make sure you get a tube long enough to reach from your child's arm, under the armpit and to the waist if you like to use the back of the arms. I've actually ordered 18" and 23" so I can change about depending on where my son wants to put the set.

    4. In our experience, we thought we were doing pretty well with basal rates and then all of sudden...BAM...we weren't doing as well as we thought so be prepared for some HIGHS....but those, of course, are much better than lows.

    5. I made an excel spreadsheet to record all of his numbers so that I could see patterns over a 2-3 day period. I would not have survived without the spreadsheet.

    6. Don't try to set too many basal rates at one time. I was so excited that we could do different basal rates at different times that I got a little over-ambitious and ended up having to go almost back to square 1. I now have only one basal rate set from 10:00 p.m. to 10 a.m. and a slightly lower basal rate set from 11:00 a.m. to 9:00 p.m. I will now change them slowly and over time as I see patterns. (Your endo and trainer will help you with doing this).

    7. If you mess up with certain parts of your infusion sets, save the extra parts that are still in perfect condition in case you need them later...this will make more sense to you after you do it.

    8. Put some extra sets and reservoirs in your purse and car and at school in case something happens....and it will happen...you'll be out and about and the set will decide to come out.

    9. Don't be surprised if you child wants to push all the buttons. My son had just turned 6 when he got his pump. He has pushed all the buttons from day 1. I just watch over his shoulder to make sure he's pushing the right buttons.

    10. Most people are very happy that after getting the pump, the A1c went down, our may go up a bit...so, don't be discouraged if this happens.

    11. We put ice on the site before we plunge the set (he counts to 100). Actually, I think this more mental for my son, but it makes for an easier time.

    I'm sure there are more things but my brain is so full...these are the only things I remember right now.
     
  4. destea1

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    Oh wow that's a good list (even if it makes me even more nervous... MDI almost seems so easy now that we have it figured it out!). Thanks for sharing, both of you! We have the angled insets for the ping now, just because she's so skinny/little, but if we have trouble I'll definitely look into switching.

    I think I'm most worried about multiple sets (she still hates shots with a passion and moves a lot :( ) and keeping the sets IN place since she's so active during the day. I'm sure trial and error will be a big part. I wish we could magically learn this technology with brain osmosis :p
     
  5. emm142

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    Angled sets are a great idea! Didn't want to mention which sets I'd had an issue with in case you were already lined up to start with those ;) but the straight in teflon sets totally didn't work for me (they said it was because of having too little body fat). The angled ones are a lot better for me - in fact they are what I am using right now.
     
  6. destea1

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    I was hoping so!

    I'm genuinely slightly terrified of this transition but I want to do it. It's only been about 8 months since our diagnosis and I feel like we have such a good handle on her shots, but the snacks are nil w/o shots because she jumps quite a bit even with 2-3g options. It stinks because at 4 she's literally hungry every .0982 seconds, and her cheese and turkey intake is off the charts :) She's excited, though I don't think she obviously grasps all that's involved. I hope her adjustment to the bigger shots and having to keep the pump with and on her 24/7 won't be too hard. At least later in life it'll be like second nature (until they come up with something new and super cool to replace it that is!)
     
  7. tandjjt

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    Think this through... pump pouches or beltclips. How we were going to have Tyler "carry" the pump was a big issue in the beginning that I didn't think about until the day we went live!

    Keeping the sites on shouldn't be an issue (unless swimming a lot) and can be handled pretty easy if you have trouble. What we ran into was him dreading taking out a site more than starting a new one. We learned to let him do a tub bath when we were changing sites and it would slip out much easier - no drama :cwds:... Pumping for 5 years almost now and he just rips them out, but it was an issue in the beginning.

    One thing I didn't realize at first was how quickly ketones can come into play once you are pumping. Remember there isn't a long acting insulin anymore - its all short acting insulin given as basal. If a site goes bad, ketones will appear much more quickly than when on MDI with Lantus/Novolog or whatever long/short combo you may have been doing before. To me, in hindsight, this is the only downside to pumping versus MDI, but it doesn't outweigh the benefits by any means.

    Good luck - I remember how nervous I was at pump start! You will do fine - its just another learning curve and absolutely worth it!
     
  8. BittysMom

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    We've been pumping for just a week, and love it! I find that whatever there may be that is temporarily more stressful than shots (for me- highs, site changes on the fly) falls in my lap. So far my daughter only thinks it's better.

    Snacking is HUGE for us. Her ratio for a good chunk of the day is 1:75 so it was hard to dose for small snacks, but those same small snacks would really raise her. I smile every time I enter 5-10 carbs into her remote.

    I wish you lots of luck. :)
     
  9. destea1

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    Thank you Bittysmom :) That's good to hear from someone using so recently (both of you really!). Even just the ratios make my head spin reading this stuff :) I'm so used to the 1 for xyz carb to unit ratios, it's so straight forward for the most part. I hope the learning curve isn't too bad :) I'm looking forward to letting her have 'real' snacks sometimes.
     
  10. Marie4Julia

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    Since your daughter is a little one, this probably doesn't apply, but for the sake of others reading i'll mention it.

    1. We love the Ping and it's the only pump my daughter wanted when we switched from Omnipod. Had I known that 1.5 years later she would be going through almost 100 units of insulin a day, I would have pushed for the minimed to get the 300 unit cartridge. She is having to change the cartridge less than every 2 days now.

    2. And this one does apply to little ones :)... When things seem to get out of hand, and you are fighting highs (or lows) and making frequent changes to basal rates, it's good to get a fresh set of eyes. Having been pumping for over 3 years I'm very confident with making my own changes and have not relied on our endo team much at all. Recently though I did lean on them... they made some aggressive changes that made all the difference in the world. I should have reached out to them sooner:eek:. But I learned something in the process and am grateful to let them make some of the decisions at this point.
     
  11. Mrs. Russman

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    The right infusion set makes all the difference in the world. Ben started with insets with 9mm canula, at recommendation of cde switched to insets with 6mm canula, and his numbers were horrible and took almost twice as much insulin. Switched back and a perfect 120 almost all day. The first time we pumped 4 years ago used an angled set, and he hated site changes and we never really got good control. Try different infusion sets to see what works best for your child.


    Temp basals are wonderful. His blood sugar was a little on the low side at 3 am and instead of waking him, I just set a negative temp basal for a couple of hours. Same thing if he is a little on the high side.

    Take advantage of all the help you can get at the beginning. I didn't the first time around and I think that contributed to not feeling successful on the pump, and quitting after 9 months.

    We are having to change cartridges almost every day too. That is one drawback on teenagers and the animas pump.
     
  12. MommytoCsquared

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    Hello!

    We started pinging on April 9th...and up to the pump start I felt terribly unprepared. Just take a deep breath and learn as much as you can. It really helped to watch the videos in the education section on the Animas site. Some of it is repetitive, but it helps. THE BIGGER HELP WAS WATCHING A FEW SITE CHANGES ON YOUTUBE. There are a few on toddlers and little ones, so that made me see it can be done and I had an idea of what to expect at the pump start.

    Anyone who helps care for your child should be at the pump start. My husband and parents were there; instead of daycare my parents care for Connor :) and it helped them see that it was going to work.

    I was the one in are care circle who really pushed for the pump, my family thought the idea of a pump was great but couldn't see Connor leaving it along or liking being tethered. He is 3 (so close enough to four and we had only been dxd for about 8 months before the pump as well). He never got used to the food schedule and hated it. The first few days after the start, I let him eat anything he wanted whenever he wanted. It took him less than 24 hours to see the benefit when he looked at me after his third 1/3 C serving of his fav greek yogurt and asked if he could have more and I said yes. He then said, "No shot" "Nope, the pump gives you medicine, no more shots." From then on, it was his favorite friend.

    Another worry was him pullin on the site...Connor is only comfortable with sites on the bum, but it works. He leaves it along and won't mess with it. Plus, don't be afraid or reluctant to use EMLA...it allows the little ones no fear of the sight changes. Connor hasn't pulled out one sight or been hampered by the pouches he wears.

    Two things I learned recently: It is okay to use a cartridge for more than one site. We barely use 50 units (which includes the priming units) every three days. I read here in a post that you can fill a cartridge all the way up (I haven't gone up to the 200 yet, but I do go about 170U. We are able to go through 2 or 3 site changes before messing with the cartidge or the tubing from the cartridge. Just checkthe tubing for kinks or air bubbles at site changes. You can also change the tubing with the site change as well but not reload or change the cartridge. One note, the heat can be a problem, so during the summer you may not want more than the 3 days worth of insulin in the cartridge.

    Lastly :) are initial order came with both straight sets and infusion 30. We just did our first infusion 30 today...and it went super smooth. I think it may become our favorite. The straight sets seemed less inimidating at first, but with the sweat, water and heat, the canula seems to small and we have had issues with losing sets early (even with major tape downs). The site change was way easy, so I will let you know if the infusion 30 stays in place better (the sales rep said they should). I will try to remember and come back to tell you :)

    Angalina

    P.S. I know many/most of the stories talk about super high numbers...but we ended up with super low. In fact, we had so many lows our first few weeks that our A1c was too low at our one month check. Just be ready for anything and stick with it; IT IS WORTH IT!!
     
  13. L101418

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    Read "Pumping Insulin" before pump start.

    Before priming hold the pump with the tubing facing towards the ceiling, tap the pump with a pen to get the bubbles close to the tubing so (most of) the bubbles get primed out.
     
  14. Ali

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    Great advice already. Agree with the use the short steel sets to begin with, start with fewer basals and then add, relax and assume you will just have bad numbers for a month (in fact you may not), remember that it is just bad numbers for a teeny teeny part of your childs life, not a big deal. All the insulin needs and ratios may change, having the insulin delivered in small amounts over 24 hours is very different from shots for most people. Call, call your endo for help. It should work, if it is not then something is wrong, the infusion set, the basals, the insulin, the carb ratios, the insulin sensitivity ratios. It is still just insulin, food and your kids metabolism, just like MDI. Good luck and read the books suggested.:cwds::)ali
     
  15. destea1

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    These are all great!! Thank you to all of you for including your input :)

    I know I've read about EMLA, IV3000 (?) and SkinTac... do I need to get something on hand to always tape down a set to keep it in? I have no idea how all of that works (or how easy it is to pull off once that stuff is used... she's a wimp about bandaids coming off so... eek).

    Thanks again! This is all very helpful :)
     
  16. nanhsot

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    My little tidbit: total amount of daily lantus as basal may NOT = total amount of basal via pump. My son needed a lot more basal via pump and I've since learned this isn't unusual.

    Also, first few days of success are likely due to leftover lantus in the system. We were all celebratory in the first week and then BAM, frustrated over the next 6. Don't be scared to tweak basals often.
     
  17. DsMom

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    Didn't read all replies...sorry if I repeat.

    Most important to me...when you feel like you made a mistake and want to throw the pump in the toilet...DON'T!!;) Things get easier, better, more intuitive...in time. Be patient with yourself!!

    Beach advice...if you are beachgoers....The first time we went while he was on the pump, we left his pump on with nothing over the infusion site. When we got home, sand and/or saltwater had clogged the site so that we could not detach him (the plastic pieces you squeeze to detach were jammed). I kind of panicked and just changed the whole site. After, my husband said we should have just soaked him in the tub for a bit and that would have cleaned out the sand.:eek: Next day, we covered the site like crazy with band aids. That worked okay...but I recommend covering sites with IV 3000....doesn't let any sand in.

    Oh, and one other time, I forgot to cover the site, it got stuck, and I did just soak him in the tub. That works too.:)

    Good luck!! Smart idea to ask this in a thread. Will save you some headaches later on!

    Good luck!!
     
  18. Meredithsmom

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    Be prepared to be sleep deprived. Testing every 2 hours 24/7 for about 2 weeks wears you down. Especially in week 2 when things seem to go haywire and you are having a hard time concentrating because you need more sleep.

    It's like having a new baby, but you really have to think and be alert when you are awake in the middle of the night.

    Coffee will be your best friend.
     
  19. Jordansmom

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    Some kids need nothing but an alcohol wipe and the infusion set. Some kids need multiple extras. Some just need extras for swimming. I'd suggest trying things first with nothing. Why add complications and steps to the procedure unless it's needed. We were started right off with Skintac and my daughter is horribly allergic but it took some work to figure out thats what is was.

    Even if you use Skintac the set will come off easier after a warm bath. Or soak the whole set in baby oil and let it sit. There are solvent wipes that you can buy, but they're a lot harsher to the skin than baby oil. It's ok to leave the old set on their body until bath time. If pulling off the old set is what's hard for her it can be good to separate that from site changes.
     
  20. Mrs. Russman

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    on being sleep deprived

    At 3 am and his blood sugar is 82 and you want a temp basal to bring him up a little, be sure and do a negative temp basal and not a positive.:eek:
     

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