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Need Advice about Pump!

Discussion in 'Parents of Children with Type 1' started by Nevaeh's mommy, Jan 31, 2012.

  1. Nevaeh's mommy

    Nevaeh's mommy Approved members

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    We went to our endo yesterday and he said if we are ready we can start the process of getting a pump. He wants us to go with medtronic. I talked with them today and we are suppose to have a rep come over and let Nevaeh feel how it feels going in and wearing it because I dont want to spend the money and then get it and her not want to wear it. She's excited and so am I!

    I just have a few questions for current pumpers!

    1) What are the cons and pros of pumping?

    2) Do you have a CGM? Why or why not? If so, do you still have to do finger pricks often? How often do you have to change that site out? Is it painful or uncomfortable? The rep said she would have to ask first to see if our doc wants us to use a CGM?

    3) Does anyone currently have the Mysentry I am a new mom to a child with type 1 (october) and I am so tired all the time because of waking up so much so it seems like it would be such a relief but is it reliable? Would you still wake up at least once or twice to make sure?

    4) Any other advice or things I should question before getting a pump for Nevaeh?

    My husband and I really want the best for Nevaeh and want her to be as normal as possible with type 1 and this seems like a step towards that.

    Thank you in advance!
     
  2. badshoe

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    Pumps open up life to a more relaxed relationship with eating as blousing is a lot less work to adjust.

    Like everything Your Diabetes May Vary.

    Our kids had cgms but got tired os the extra 'set' real-estate they take to wear. They are great for tuning the pump and managing basal rates.

    One of the issues to be aware of is how it feels to put on a set. Put one on mom and dad first and no wincing if she is watching. Our younger T1D was no fan of set changes and numbing cream saved the day, well sort of. Set changes were not popular.

    We also found that with the younger smaller pumper finding basal that stable over night was hard. One click less basal and she went high but the click up to the next level and she went low. I ended up making alternating up and down basal rates every hour. Crazy but it worked.

    I guess both those take a little of the gloss off the pump but no way would I go back. Pumps are not magic but they allow you to get better results and have less crazy lifestyles even if they bring their own craziness.
     
  3. lynn

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    Wow, you must have a super-good endo! I hear so often around here that their endo won't discuss pumping for a year. I'll give your questions a shot.

    1. My Nathan began pumping the month before he turned four. It was wonderful in that he could have little amounts of carbs again for the first time since diagnosis. Such large I:C ratios made dosing a quarter of a unit or less of insulin impossible for me with a syringe. The assistant at the kids' dentist told me that pumping will make me feel like we have our life back. In many ways it felt like that---food became much more normal again.
    Cons: I think that the pump opens up a multitude of other possibilities to problem solve. Is he high because of a bad site? Is the cannula kinked? Is the battery low (we always see highs with low batteries, are we the only ones?)? Is the tubing full of bubbles? Etc.

    2. We do not have a cgms. Our insurance hasn't been keen on paying and we don't have it to pay out of pocket.

    3. Again, no cgms.

    4. My advice would be to think through who will be making the decision. Some parents give the choice to the child, thinking that it is the child's body and they will not force a pump on them. Other parents make the choice themselves, thinking that they are the adult with the knowledge to know what is best for the child. I would recommend you know which parent you are so you are ready to handle it when your daughter inevitably has a day when she doesn't want the pump.

    I wish you well!
     
  4. Nevaeh's mommy

    Nevaeh's mommy Approved members

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    Thank you

    Thank you so much for your response and your honesty! Thats why I wanted her to try it because i thought it might not feel so great at first. We have the numbing cream but don't use it any more so I'll remember that when we try it! Should I use the numbing cream that day?
     
  5. JaxDad

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    YES!

    I'll try to get back and add more later but for now - that's a resounding yes. First impressions are everything.
     
  6. kiwikid

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    That depends on your child. My daughter HATES the removal of the covering of the cream more than anything else D wise, so we use ice..
     
  7. cm4kelly

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    My experience

    I live in S.C. too!

    My advice from experience with my four-year old. CGM's are great technology, but I found it was overwhelming trying to learn everything at once.

    I would recommend to start with pumping first and then add the CGM at a later date. When we tried to combine everything - even with 2 weeks in between - it was just way too overwhelming.

    Learn your pump for a while and then add CGM later. For most insurances to pay for CGM you will have to log quite a few lows in your blood sugar chart or they will deny the neccessity. We also attached a letter demonstrating how important it was to our child's health with illustrations of lows during the night that we were lucky we caught and once when he went to 40 during church in the nursery - which could have been prevented with a CGM.
     
  8. mysweetwill

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    We are also relatively new to D and have just ordered the Medtronic pump, the CGM and MySentry. Did you see the recent post on MySentry? I don't know how to link it, but it's on the first page still.
    Although many have told us the inserter for the Medtronic CGM is bigger than the dexcom, having one instrument rather than 2 pushed us towards Medtronic. I was on the fence about MySentry but from what I read on this board, the people who have it seem to love it.
     
  9. lisanc

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    We have the revel pump, cgm and mysentry.

    We actually started on the CGM 2 weeks before the pump which really help us out on the pump start. We put in a CGM site once a week. We use ice to numb the site and my daughter does not think the insertion is painful. You still have to fingersticks to calibrate, before meals, and before you do any correction in case the CGM is off for some reason. In fact, I think at first we actually did more fingersticks until we got used to the system but now it does serve to reduce fingersticks.

    We absolutely love the CGM, it gives great peace of mind especially at night and at school. The mysentry has also been a wonderful addition. I have not gotten up nearly as much to check her because I can see her # on my nightstand ... which is wonderful!

    Bottom line ... is we love the system!
     
  10. emm142

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    Okay, this might sound blunt but.. she's 4 years old. She's probably not going to want to wear it. When she 'tries it on' she's going to experience all the negatives (pain, being attached to something, an extra needle) and she's too young to rationalise that with the positives (no shot, greater freedom with food). If she really is excited then I guess that's your call to make, but for most kids I think it's better for the parent to attach the pump to themselves. Show her that it's okay and it doesn't hurt, and let her take a look at it.

    But that's all totally my opinion, and I've never been a parent (obviously). :cwds:
     
  11. Connor's Mom

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    Everything has not been sunshine and lollipops for us on the pump. My son is 10 and he loves it! I did notice today that because he is on his pump, he doesn't know his I:C ratio and his correction factor lime he did prior to the pump. That is my fault for not making sure he pays attention to it every time he doses himself. Your daughter is a lot younger so, you won't need to worry about that for a while;).

    I had a really hard time finding basal rates that work for my son and we have a huge variation from one site to another. We use the Ping and do not have a CGM. I think one would be helpful but, our insurance will not cover it.

    I think if you make the pump a positive tool and have her pick out a pouch it will help her want to wear it. My nephew started on the pump when he was 3 and after he picked out his pump pouch he wanted to show it to everyone. He isn't always excited to have his site changed but, he likes it better than shots:p
     
  12. swimmom

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    Excellent advice from Emma. A saline start is kind of like the worst of both worlds, you have an insertion and must still take shots. Also, saline can burn a liitle going into the site.

    We love our Medtronic pump. Life is much easier and her numbers are better with it.
     
  13. JaxDad

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    We use the 1.5" wide woven tape (not waterpoof) to make a square and cover the emla. Uni-Solve goes right through the tape and removes the adhesive quickly and easily, no pain, no mess.
     
  14. cdninct

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    Absolutely! If you want her to use a pump, then go with it. I know people have different opinions, and these beliefs are based on their personal beliefs and the ages and personalities of their children. For me, I believe that this choice is too big for a young child to make. Our son was just about to turn 3 at the time, and the only reason I would have considered having him try out pumps and be involved in decision-making would have been if we had been deciding between one brand and another (and if we, as his parents, had really not cared which one he chose).

    For us, a trial would have been a disaster for the reasons that Emma gave. Our son cried and fussed on the day he started pumping, but the payoff was immediately apparent to him because, at the excellent advice of the pump trainer, we took him out for an ice cream cone that afternoon. It was an extra special treat because it was something that he had not been able to do since dx because of his NPH regimen. Had he tried it out first, he would have experienced the discomfort without the benefits, and that would have clouded his opinion of pumping before we even started. Like Emma said, if you want to show her what it will be like, stick it in you. She will appreciate the modelling, and you will appreciate knowing what it feels like. My son stuck the first CGM sensor in me on start day, and he thought it was awesome. I was a bit afraid of the pain that many people complain about (compounded by the fact that the procedure was to be done by a 3 year old!), but in the end it turned out to be reassuring because it really didn't hurt at all.

    We wanted to throw the pump out every day for about the first 6 weeks because we couldn't get the settings right. His BGs were all over the place, and he hated wearing the thing and getting site changes done. We wouldn't want to do diabetes without it now. Eating is so much more normal than it was on shots (especially on NPH), because if DS wants or needs to eat, he can go ahead and do so. We can also correct highs much more aggressively because we can give him the little doses he would need to go from, say, a 180 to a 130, rather than waiting for him to get high enough to warrant a half-unit of insulin. It is also much easier to leave him with somebody else, since they don't have to worry about drawing up insulin and they can let the computer figure out the dose for them. Cons are that it is always hanging off him and that there is always the chance of site failures. Having said that, we have yet to have a true failure in 9 months, possibly because we use the Sure-T steel needle sets, so there is no chance of a cannula kinking.

    As for the CGM, we only wanted to throw it out for the first three weeks! It gives great information, but at two months in, we definitely test as much as we did before. If he is having a good day and the sensor has been reading reliably, we might only test 5-6 times, but on other days where his numbers are bouncing around and the sensor is giving us weird numbers, we can wind up testing 14 times, between corrections (which I wouldn't want to gauge with the CGM), testing at all meals and snacks to figure out whether or not the CGM is reading properly, and testing at "flat times" to calibrate the sensor. Before using the CGM, we tested 9-10 times a day, and we thought we knew what was going on, but looking at CGM data, we realize that we were missing so much. Now we are looking at video footage, not just snapshots! It has helped us be much more aggressive because we can treat highs knowing that we can catch any resulting lows.

    Though they are both valuable and I don't think at the end of the day it really matters when and in what order you start them, I would actually tend slightly to agree with the poster who suggested starting with the CGM first. It may make it much easier for you to get the pump set up properly. On the other hand, the needle is bigger and potentially more painful. For DS, he doesn't really mind either one being inserted, even without numbing cream (it took him 6 weeks to get over the fear of the site changes, and he has never really gotten too worked up about the CGM). If your insurance is willing to pay for/help out with the CGM, I would absolutely go for it (and, fwiw, ours didn't bat an eye at covering us under a year after dx and with no requests for documentation of lows--every plan is different).

    I'd love a mySentry, but we won't be getting one anytime soon! For now, we got insurance to cover both the Revel pump and the Guardian stand-alone CGM system, so we use the Guardian as our nighttime alert system (I don't hear its beeping in the night, but I definitely here it vibrate anywhere in the house when it is quiet). It works well enough, but if it weren't for the pricetag, I would definitely go for the mySentry.

    One last point (and sorry for the long message!). You said your endo wants you to get the Medtronic. We love ours and wouldn't change our minds if we had to do it over again, but we got to make the decision on our own. To me, that should be a family's decision, not the doctor's. If you are happy with Medtronic, go for it. If not, look into the other options and see which one you would prefer.

    Good luck!
     
  15. BittysMom

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    I'm in that boat, and considering Endo shopping because of it. We have to see the nutritionist (again) in February to make sure I can count carbs :rolleyes: see the Endo in March, the CDE again in April and then pump class with a saline start on Caroline in July.:mad:

    My husband ducks and runs for cover when I get going on this subject, lmao
     
  16. badshoe

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    You can do the saline on yourself so you get the practice. Do all the actions you do with a needle to you child to your self with the saline pump. Get you some practice and you are gonna be the pump operator.
     
  17. akgiauque

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    1. Pros, we have way better A1c, the dosing is more refined & we have ones set every three days vs 5-6 shots per day. Cons, keytones come on fast for us, troubleshooting set problems is tough becuse it does not happen very often. We second guess ourselves.
    2. No CGM, we just do not have enough realestate.
    3. NO, we still check her at night if something odd is happening.
    4. Are you comfortable managing diabetic emergencies? with Lantus we had slower onset of keytones so it was not as much of an emergency. With the pump it can happen fast.
     
  18. Gracie'sMom

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    1) What are the cons and pros of pumping? Pro's -- quality of life, being able to have seconds without getting another shot, same with appetizers, sick days are easier (can remove pump or turn down insulin for a while if vomiting). Con's -- no long acting insulin on board so if pump malfunctions BG's rise quickly and usually with ketones, sounds like you are already checking a lot so I am sure you would catch them. We have had it happen a couple of times but we check a minimum of every 4 hours.

    2) Do you have a CGM? Why or why not? If so, do you still have to do finger pricks often? How often do you have to change that site out? Is it painful or uncomfortable? The rep said she would have to ask first to see if our doc wants us to use a CGM? We use the Medtronic CGM. She also used the dexcom for a while. We like both but use Medtronic because she doesn't want to carry a dexcom receiver around. We do fingerpricks just as often or a little more, because we now realize how erratic her BG's are. Then we correct them whereas before we were clueless. We change her site about every 7 days. It is a little painful, but we use EMLA which helps. Just one note, though, learning both the pump and CGM at the same time will be difficult, so you should probably just do the pump for 2-3 weeks and then introduce the CGM. The CGM has a long learning curve if you haven't used one before -- it is well worth the aggravation but you have to stick with it!!! The CGM has definitely been a life-saver for her as she goes low frequently at night (like into the 30's without waking up!).

    3) Does anyone currently have the Mysentry I am a new mom to a child with type 1 (october) and I am so tired all the time because of waking up so much so it seems like it would be such a relief but is it reliable? Would you still wake up at least once or twice to make sure? We do not have the MySentry. I am not paying $2400 for a glorified baby monitor no matter how great it is. We use a baby monitor next to her bed. $20. Works for us. I will never not get up and check her BG once during the night. I will not rely on technology for saving her life. If can be way off. Usually it catches a lot of nighttime highs and lows, but to keep me on my toes every month we get at least once time where it says she's low and she's 300 (laying on the sensor, usually).

    4) Any other advice or things I should question before getting a pump for Nevaeh? My advice is to make sure you are thinking about the next 3-4 years when you pick the pump. We initially picked the ping, which I loved -- she was 8 and the remote was great, but she quickly needed a lot more insulin and we were changing the reservoir's at least every 2 days. We ended up switching to the larger medtronic (wouldn't go with the smaller one for any child 7+) and the reservoir is much larger and we only change it every 5 days. The site we change every 3 days, of course. Plus, she was done carrying a dexcom and a pump, so having them integrated is key and we got tired of waiting for dexcom and animas to get approval. We have been very happy with both pump companies, great customer service and nice products.
     

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