CGM? Insulin Pump?…..Is it JUST the Parent’s Decision?

Right Decision, Wrong Decision Road SignI wear glasses for reading.  I hate them.  I hate that my age caught up with me and those letters became fuzzier and fuzzier until the inevitable became the reality…..I got glasses.  I hate wearing something on my body that was not born with me into this world.

I’m sure you can see where this is going.  For some time I have seen posts from people asking about insulin pumps and CGMs.  Should we get one.  We are thinking about…. We were discussing and we want to get Suzie a pump…..
Now understanding that age surely plays a role in who is involved in the decision process but on many occasion I hear nothing of the child’s input to the decision about attaching something to their body, moving forward.  And two things if you count a CGM.

I just want to remind everyone that unless you know what this is like, do not make the decision with too much haste.  When Kaitlyn was diagnosed, we wore the pump (with saline) for seven days. It’s a royal pain in the butt to be quite candid.  I can only imagine what this is like FULL TIME.

I would love to tell you what to do here, I know what we did, but that may not be what you need, or want, to do.  SO I ask all of you to chime in.  Did you discuss with your child about the wearing of a CGM and/or an insulin pump before you went ahead and purchased one.

If, in any shape or form, you came to a conclusion on your child wearing a device; how much were they in the equation?   It can be a decision that is agonized over for some time.  Many people go through this….so this discussion could be a big help.  And again, please reply to this post here and not on the FB page so everyone can read it here and follow it.

To recap: was/is your child with diabetes involved in making the decision on an insulin pump and/or a CGM?  And to those who are on a pump and CGM; how would you have felt if your parents made that decision for you?

A dialogue begins………..now.

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52 thoughts on “CGM? Insulin Pump?…..Is it JUST the Parent’s Decision?

  1. My 5 year old is on Medtronic pump, we have CGM, but no longer use it. It became too stressful for our son to put on, as nice as it would be to have it on him, his emotional state, stress levels, and non acceptance of having to get poked one more time made our decision. I hope in the future we can discuss with him the help it would be, but it will be his decision.

  2. My son was dx in February at age 14 (he’s now 15). I wouldn’t say that the endo was pushing a pump, but they strongly encouraged us to go to the pump class in May since they only have them every 3 months. I thought, and still think, that there are a lot of great advantages to using the pump. But it became clear to me that my son was just not ready. And he eventually figured that out for himself. So now I wait…I don’t occasionally ask in case he has changed his mind. I know he knows it’s there, and when he’s ready we can move forward. At his last endo appointment, he brought it up before they could, and told them not yet. Happily they did not try to change his mind.

  3. I really wanted my son to have a pump, reason being, to save him from having multiple injections every day, he was 10 at the time. When my husband and I asked our son about it the first thing out of his mouth was “why would I want to be attached to something for 24 hrs in a day”, so his short answer was no. I had thought about that but it didn’t ever cross MY mind as a valid reason for not having one. We never got our son a pump, and to this day (even though his paed wants him to have one) he still doesn’t want to be attached to something 24/7 (son is now 15) and we as his parents accept and respect his decision.

  4. My son is almost 9, just over year past diagnosis, on Dexcom for year and pumping for 3 months. We did not give choice on CGM as I feel safer with it since he does not feel lows. He has not complained. We did pump to “try” it, I hated it at first and wanted to go back to MDI. He begged to stay on it and ultimately I’m glad. Once I got used to it it made things easier. The ONLY reason I did not give up on it is because he wanted it so much. I think pump or shots is up to him, I’ll make it work whichever he wants. So for us CGM no choice for his safety, pump totally his choice. 🙂

  5. My 1st child was dxd at age 5 on 12/22/2000. It was at a time when we had to advocate hard to get a child that young on a pump. I knew it was better for her health overall so I wanted her to have one. She was so young that I made the decision for her. She decided at age 13 to not wear a pump anymore. I always kept buying the latest pumps and kept them for her in case she wanted to go back. That didn’t happen until she was 18. 🙂 It always rankled me but it was her choice and I didn’t want to fight about it. She now chooses to wear her pump and a Dexcom CGM and runs her A1c in the 6’s. Her choice. But I did pressure her about her diabetes care along the way and I ran a tight ship with her about diabetes care expectations. My 2nd D child was dxd in 10/3/2010 at age 2.5. She is on the pump and Dexcom CGM. It is the best care and the best way to prevent seizures and keep her safe, so there are no questions asked about her being on these devices. It’s just part of life for her.

    • T1D isn’t a choice. MDI should never be an option. All people with T1D should be given the choice of which pump but forced to wear a pump never even given the option for shots. While wearing a pump can be annoying sometimes for some a long term complication is always annoying. Complications are reduced by roughly 80%. There is no question other than which pump. Shots are one letter away from sh*t for a reason. Not a choice. Endo’s that force a pump have overall the patients average A1c’s in the 7 range. Sometimes in life we have to suck it up when it comes to diabetes the key is to pump and dexcom (not Medtronic CGM as it sucks and always will) should be forced and only tandem and animas should be on the market. Sometimes parents need to suck it up and say too bad it’s best for you. Allowing MDI is not okay.

      • I will address your stance in a future article—-you will (or may be) a tad surprised on how split the D community is on this issue—-including medical professionals. Stay tuned —-thanks for writing

  6. My son was 3 at diagnosis, and like others here, I was initially opposed to having a device attached to him 24/7. We tried MDI and it clearly wasn’t working well for him so we began on OmniPod at age 4. He is now 10 and we do discuss his options regularly – whether to try shots or even a different pump. He is satisfied with OmniPod (and Dexcom) for now, hates giving himself shots, and knows he has the option to change his mind.

  7. We are currently deciding if we will do a CGM and Pump. Our daughter, who is nine, is very much a part of this discussion. We did pump class and she did one inset of one brand and hated it. We waited until recently to try again. We tried a different pump, different spot and asked the best way to remove it. She loved the demo. She told us she is tired of doing all the shots. We would like to try the CGM because she has such rapid swings of highs and lows playing soccer. We are all still discussing, but she is a big part of the picture since she will be wearing it every day. We also have to be good with it since we will be helping her with it every day.

    • I would imagine that the CGM would help her to ‘stay on the soccer field longer’ or at least….have shorter times that she is not on the field. Let me know how that all works out during the season……….nothing slows her down….THAT is the best thing.

  8. James is 3. We feel that a pump would help us with a lot of issues about his diabetes but recognise it’s him that has to wear it & not us. We’re early on in our research but I have mentioned it to him, very briefly when appropriate, shown him pictures & talked about a friend we know with one, all in factual terms as much as I can & without ‘selling’ it to him & that’s mainly because we’ve got to figure out if it’s the right thing too. I want him to see one at clinic, touch one & do one of these saline trials if he is willing. We cannot ask him to be involved in the decision. He is 3. But we can weigh up his reactions & feelings about it along with a little practical experience against the potential benefits & if he can tolerate it we will give it a go!

    • When Kaitlyn was diagnosed at 2, I always resented that we had to be ‘everything’ for her. I feel your ‘pain’ trying to explain as best as you can to a 3 year old……the good news is that she is 24 now and excels at just about everything. May James be the same. 🙂

  9. We made sure our daughter (diagnosed at 5) was on-board before we did the pump. Unfortunately 1 month after wearing it she was so stressed out and hating the pump that we went off it for a year. She is now 7, and just surprised us the 2 weeks ago while at her endo apt. She informed us that she wanted to go back on it again! 2 weeks into now and were see great improvements, despite the site changes the numerous pod issues/alarms, she is wanted to get it figured out!
    We have always let her help with decisions as this is her body and she will have to make decisions in the future without us around. At least at this stage we can help guide her decision making so she can start to understand what may/may not happen when choices have to be made.

  10. When our son was diagnosed 11 years ago at age 4.5, we, the parents sought out an insulin pump. The insulins we used at the time were not particularly helpful AND he was very needle-adverse. We did let him see the different pumps and he helped to pick his first pump (the blue one). I always tell people to include their child in the decision! Even though we are talking about medical equipment that costs several thousands of dollars, when the child is given that respect and is allowed to give some/any input, you will have a more compliant user! Besides, there is no “bad” choice. All the pumps do the same thing – they pump insulin! However, for the first time pumping, I believe the decision (whether to pump or not) should be made by the parents. The child may be too afraid of the unknown to make a rational decision. If after a year of pumping the child wants to go back to MDI, I would work with my child on it. The same goes for the cgm use. It is an important tool for managing D in a growing child. Many kids are excited and/or comforted by knowing or seeing their numbers. Our son is not one of those kids so we resort to rewards and use the cgm only intermittently. It is a compromise, and we include him in the discussion. He is a teen but throughout the years we have had age appropriate talks about what we need to do to manage diabetes. CGM use is a part of our conversation.

    • I have quoted him a million times and I will do it a million more—the (late) Great Dr. Richard Rubin…..it is about choices and it is about balance. Seems you are on point. 🙂

  11. My son was dx’ed 3 and half years ago when he was 10. For the first year he was on 3 different kinds of insulin. And given shots 2 times a day and had specific times and amounts of carbs he could eat. It was tiring so when the option of pump came along, he really wanted to do it and he was the one to pick out the pump since he would be the one wearing it.

    For a year now- he is 13 1/2 he has been rebelling and not really caring about hi blood sugar levels and lying to me about his numbers. I finally got fed up and asked the endo about the cgm. We had a discussion with my son about how Diabetes sucks but we NEED to be able to help him take care of himself. He said he would try the cgm. We got the Cgm last week and even though it hurt a little bit when he first put it on, he has since started to take responsibility of his diabetes and calibrating the cgm on his own and it has been such a lifesaver in our home because his attitude was spiraling downward. He is now seeing that trust is a big issue and if we trust him, we will let him go places knowing he will take care of his diabetes. It’s only been a week, but what a huge difference it has been! I am not one to force him to do one things or another- we are trying to find our rythm and work together and not let this stupid diabetes win!

  12. My daughter saw a couple of other children with pumps 6months into diagnosis (aged 7) and made up her own mind she wanted one. She was happier and looked healthier when she got it. 3.5 yrs further on we have just trialled a dexcom. I was unsure of her wearing something else (though I love the advantages of it) and thought she might hate it. I was wrong, she didn’t mind the insertion at all and loved it from day 1 when it woke her for a 6am hypo she would have missed (she has little to no hypo awareness). Now she is begging me to try and get her one full time. I see the benefits it will bring but was keen to make sure it was her decision not mine, she is the one who has to wear it after all! She said it made her “feel safe” and it made her numerous sporting tournaments a hell of a lot easier to manage without hypos to stop her. (In the 11 day she wore it she had 3x 2.5 hour tournaments). At 10 I believe it is vital she has input into her own care decisions.

  13. My daughter was dx at 15 months and it took her a long time until she was ready to move on to a pump. When the tube-free omnipod came out, she liked the idea and decided that it was finally time. She recently, now 17, started the Dexcom. It is a hard decision to add another piece of “hardware” to your body, especially as a young lady, but it was always her choice. She will be the one ultimately caring for herself in the future, so we felt letting her take part in her own healthcare would make her more compliant and more comfortable with herself. My 2nd child with D is now 5yrs old. He has been on the pump for over a year and he loves his pump. Multiple injections were just not got him. The next choice will be to Dexcom or not. We just show him his sisters’and tell him about it. I think the more a child feels control over their D, the more likely they are to handle it.

  14. My son was Dx’d at 6 (he is 11 now). He has always said no to the pump or CGM. He says he doesn’t want anything “on him”. He’s very active in multiple sports and feels that a pump will either get in the way or have to be removed anyway…so why bother. I let him call the shots (pun intended) on this. It’s HIS disease, HIS body, HIS choice. He doesn’t have a lot of say in things so I feel giving him This choice is empowering for him.

    There are many, many people pushing him to get a pump/CGM on a constant basis: Doctors, school nurse, family, friends, and even complete strangers. A friend of ours even offered to buy it for him….still an adamant NO. What is baffling to me is their reaction when he says no. They try to convince him of how much better his control will be, how much easier it would be to deliver the insulin, etc. some even get a bit miffed when he doesn’t agree. They shake their head in disbelief at him….and I do the same in return…..at them.

  15. When my first got a pump, she had a clinical need for one, and was one of the first kids in our area to get one. She was loosing weight and not growing, she’s one of those rare ones who doesn’t respond as designed, to long acting insulins.

    For my second, the hospital refused a pump due to him not having a clinical need. It was horrendous, treating both children differently, and he was so jealous that his sister didn’t have to have all the injections. He went on carb strike, so he didn’t have to have more than one injection a day. It took 11 months, with the child psychiatrist fighting with us for him to be allowed the pump to be the same as his sister.

  16. We are looking at this right now my son is 4 and we are considering his feelings in all of it. If he doesn’t want to do it we will not make him but I do want him to meet kids on pumps and see what they little look like and stuff before he just says no but we won’t make him use them if he doesn’t want to

  17. Agree. I get some flack because my son only wears his CGM once every few months. Furthermore, when he is wearing it, he does not take the receiver to school because he doesn’t want to carry a pump & receiver. If it were entirely up to me, he’d wear it 24/7 but it’s his decision too – and if it were up to him, he wouldn’t wear it at all. So we compromised. That 2 weeks of CGM info every few months is like Christmas for me.

  18. Our child was dx at 2, so we did not discuss it with her. My dh was dx 30 years ago and did shots for 20 years before going on a pump, so his understanding of everything was pretty clear. Something that I think should be part of the discussion here is the effectiveness of the current treatment. If insulin needs are tiny, a pump makes good management possible (try giving a shot of .3 units). If numbers are all over the place and no one can figure out why, a cgm may be needed as a diagnostic tool. We make lots of decisions every day about all our children’s health care, safety, education, etc. Absolutely older children should be consulted, but ultimately it is up to do what is best for our kids until they’re old enough to do it themselves.

  19. My daughter was 6 when dx’d. She is now 8. We are still on shots and she wants NOTHING to do with the pump. That is her decision and with all she has to do and deal with that is OUT of her control. I am fine with HER decision. I have had MANY tell me. As a parent I should just MAKE her! No way!!! We have been on a CGM for 6 days now. Sadly, Bella had so many lows, she was becoming unaware. After a 26 in the middle of the pumpkin patch, we knew it was time for the CGM. It has been GREAT! (all 6 days of it) Love and hugs to all those DOC mommas and Daddys.

    • I know of many people who thought many things that they should not be so quick to push…..we know. Our gut is the most revealing thing in almost all we do. Thanks for writing.

  20. Our daughter was diagnosed at 11YO. The pump was encouraged by her D team and us, and all the pros and cons discussed with her, but the final say was hers.
    I let her practice putting a pump site on me, to see what it was like and – only after a couple of hours – I went to the bathroom and whilst removing my pants, managed to pull the site out (those aren’t the sites we chose to use)!! I can only imagine what a pain in the butt it is, having something stuck to you 24/7, so the decision has to be the wearer’s when they are old enough to make that decision. (
    If I had a very small child I would definitely choose to pump, and obviously they wouldn’t / couldn’t make the decision)
    Our daughter (now 14) has recently trialled a CGM and she is still undecided if she wants to use them, but, the decision is 100% hers. However, if, for example, she was hypo unaware, we would be more proactive in ‘encouraging’ the use of one!
    I really think it depends on so many factors and variables, but at the end of the day, they’re the ones with things stuck to their body!

  21. My daughter was diagnosed at 7 (nearly 8). 10 days after dx she chatted to a pump user and decided that was what she wanted, decision was hers entirely. She’s now been pumping for 2 years. We’re fortunate enough to live in the UK so we don’t pay for the pump or pump supplies. Jaz doesn’t have a cgm as her control means she wouldn’t be funded for one. Looking at the Abbot freestyle libre as an affordable alternative as I think it would be beneficial as she likes endurance events….again it will be her decision, I’m not wearing it and at the moment she has good hypo awareness. I would love her to have it for night testing, school residentials etc..even if it wasn’t full time.

  22. My son is seven and he tried wearing a CGM but did not like it. We do not make him wear it and it is his choice if he decides to ever try it again. He wants to try the Omnipod and we are waiting for approval from his doctor. This, too, will be his choice whether he likes it or not. Diabetes is hard enough without forcing him to wear devices, too. We can take care of his needs without these devices so it will be his choice to use them or not use them.

  23. Our son was four when we put him on the pump. My feeling was that at four you get to decide what clothes to wear on weekends (weekdays are uniform). But you don’t get to decide medical care. When he wanted a holiday in his teens, that was his decision. He stayed off one quarter of a year only to find his a1c skyrocket. It was his choice to go back on. When I adopted a nine month old with diabetes, we made that choice to put her on a pump unalterably. When my 15 year old was diagnosed, she chose to go on a pump and CGM. I think there is an age at which it is totally appropriate to make these decisions for your child. Where we fall on that timeline is individual.

  24. Hey Tom,
    As parents to a teenaged son, we grapple (in discussions with ourselves) with this often. Our kiddo was dx at 13 and is now 15 so from the get-go was part of the decision making process. He says no to a pump and a cgm. We know that either or both of those things could simplify or streamline, if you will, his life but the decision is ultimately his. Does it drive us a little crazy sometimes that he won’t even give them a try? Yes. We just make sure that he is educated so that he is making an informed decision.

  25. Our daughter (now 13) was diagnosed 2.5 years ago. She had been adamantly against a pump until about 3 months ago. We didn’t push her, even though my husband and I really wanted her to try it. She finally mentioned that she wanted to look into it and so we gathered information and she decided which one she wanted. Even up until last week she was having doubts, but agreed to try it. Yesterday was her first full day of pumping (with insulin) and it’s gone very well. Her numbers have been surprisingly good. We’ve told her that it’s not for everyone and we can always go back to MDI, but that she needs to give the pump a few months to see how it goes. I’m crossing my fingers, but ultimately the decision is hers.

  26. First off, I only recently found your facebook page and have been reading your articles on your website in my free time, and thank you for writing what and how you do. I’m 21 and was diagnosed with Type 1 just one month after turning 7. I was told about pumps but not very much about them and thought it was surgery and that they put the pump inside of you, until recently, when I started researching on my own. The decision on a pump was left entirely up to me, and now that I am 21 and starting to be more independent with college, job, bills, and looking to move out on my own in the next couple years, I am very open and wanting a pump. Just some advice for parents: if it is a matter of age of safety, there of course should be no question about what should be done for the child, and that is what will be best for him/her and most importantly keep them safe; however, for older childen or teens, please make sure to explain things to them so they are accurately informed on the new technologies out there that can help them.

    • I am sorry no one explained to you how the pump worked from the onset. As you can see, there is much information out there and both of our kids are well versed on how well they work; and HOW they work.
      Thanks for writing.

  27. I’m up at 3 in the morning agonizing over this. My 12 year-old has a pump and CGM. He likes the pump and has worn one since he was seven. However, he hates his CGM. Every time it’s time to put it on, he yells at my wife and I, telling us we don’t care about how much pain it causes him. My wife needs the CGM so that she doesn’t worry about my son’s safety, but I fear taking control away from my son is hurting his emotional well-being. Any advice?

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