9 year old daughter doesn't want CGM or Pump


(Diana) #1

Hello,
My daughter was diagnosed last year and it has been a crazy roller coaster ride. We got the Dexcom and she wore it for a week and hated it. She’s afraid of fire alarms and fireworks and when her Dexcom alarm went off at school it made her very upset. We use the insulin pen and she hates to take shots and I keep telling her if she had the Omnipod then she wouldn’t have to get so many shots in one day, only once every 3 days. I want to make her life easier but she keeps putting it off and doesn’t want to wear them. I would love to have the Dexcom again so I can get some sleep at night. I still get up around 3am to check on her and I’m always tired. I told her doctor I want her to get the pump, but since my daughter was against it she wouldn’t prescribe it. It is so frustrating and I think her life would be better and she would have better numbers if she had the CGM and Pump. My daughter told me the Dexcom hurts to put on, so I think that is why she doesn’t want to get the Omnipod. Any suggestions to help her change her mind? I don’t want to push it on her, but I think it would be better for her.


(BookwormNerd13) #2

That’s a tricky situation.
I’m 15; I’ve had T1D since I was 7 and I still take injections. My doctor has tried several times to convince me to wear a pump and CGM, but I’m not comfortable with the idea of wearing something all the time (and frankly, it’s a little scary).
I’m only telling you this to make the point that if your daughter genuinely doesn’t want a pump or CGM, that’s perfectly fine. Sit down with her and have a conversation about whether she prefers shots or a pump. And be prepared for the fact that she might not be sure! Talk out the pros and cons with her, and explain why you think a CGM/pump would be better for her. Listen to her fears/hesitations and try to reassure her. It may also help to have her talk to her doctor about why she doesn’t want to wear a pump/CGM, so they can reassure her further any answer any questions she may have. That may help her feel more comfortable with the idea. If she decides that she’d rather stick to shots, that’s ok too! In some ways, shots can be easier. It’s all a matter of preference.
Please message me if you have any further questions or just want to talk! Best of luck! :slight_smile:
–Abby


(Dennis J. Dacey, PwD) #3

Hi @Diana,

I’ve observed and know of a few young ladies, including the daughter of one of my doctors, who use the Omnipod and I think it would me a good solution for your daughter - based on what you say here and in your other query.

But I can relate to her in rejecting a pump - I didn’t switch to a pump, although urged to by doctors, until 40+ years of multiple injections; the first pump I was offered was worn as a backpack. MDI will work for her and get the job done quite well, but you can easily point out to her that 122 pump mountings is far less than the more than 1,464 to 1,550 injections with pens. I certainly enjoy the “freedom” I get from my Minimed Medtronic pumps, not only way fewer needle sticks but the ability to be less rigid with timing of meals; with a lot of business travel [time zones] and fitting meals into meetings the pump was a blessing.


(Wendy Spencer) #4

Hi There. My 14 year old daughter refuses all technology too! So she does finger prick tests and pen injections. I was hoping she would give her fingertips a break and try the CGM. She did a two week trial, and hated it. She said it made her feel less human and more machine. So we haven’t pursued it any further. I respect her decision even though I wish it were different. Best wishes to you and your daughter.


(datamystic) #5

My daughter tried the pump for a year but hated it and has never wanted to go back despite cajoling. I also tried it for the same time and also did not go back to it.
You can achieve freedom with MDI using tools like the PredictBGL App. It might save you getting up at 3am as well.


(ReneeM) #6

My son is now 11 and dx’d at 8 and we were having lows and he is not comfortable telling friends he has type 1 kids want to fit in at this age, it is very socially normal to not want to stick out, blood and shots sticks out. Anyway, two things = finding what you can trade up to bribe her to do, really. My son told his friends after i promised trip to Lego store, another trip to Lego store got him to try Dexcom.

It’s not overnight, keep trying but fine line between nagging and trying to focus on prize.

At first with Dexcom my son wanted to faint with fear of pain…this has dissipated significantly. We have fun routine where he watches v or ipad, his favorite show or game and then we give him control to say “when”.

Good luck it;s not as easy as it sounds.


(Sandra Kochenower) #7

I’m sorry you are having a difficult time with your daughter, well sorry she’s struggling so much with the cgm. My 8yo son has voiced similar reservations, though we are just 6wk into his Dx. We go tomorrow to pick his cgm up and learn about using it. It took him being exhausted with 3am checks and noticing the bags under Mommy’s eyes. He’s always been very considerate and sweet…he actually apologized for “getting” T1D, which was crushing.

He initially declared that he had no interest in anything like a cgm or pump and if he was willing to do the work, I was too. Finally, after watching several YouTube videos, he wanted to discuss it. Through long talks, a lengthy “T1D Challenges and Unexpected Benefits” list, and being frustrated with his sporadic BG numbers, he has decided to give it a try. I’m hopeful, at best, terrified he’s agreed to it for the wrong reasons…Well, I guess my point, in all of this rambling is that all we can do is make the tools available to them to make their lives as comfortable and free and normalized as possible and let them take the reins. After all, what else can we really do?


(Diana) #8

Thank you for the info.


(anniceskates) #9

Hi Diana,
I was also diagnosed 1 year ago but I was 53 years old. I too did not want to use pump or CGM because I teach kindergarten and am worried the kids might pull it off. They give lots of hugs. I use Dexcom now because I go low while at work. I also use iport for injections so you get 1 needle every 3 days. The other needles go into port so you don’t feel it. Mine is not covered by insurance but it is worth the cost to have less needle sticks!
From a teaching stand point I found if you are honest up front with the other student they will be supportive to your daughter. Also try to find other type 1s she can connect to. We have a TK student this year and we already showed each other our Dexcoms.

Best of luck
Ann


(amyzbbb) #10

I had a suggestion when it concerns pain when inserting your sensor or infusion site. There is a cream that your physician can prescribe. It’s suppose to numb the area so its not as painful. It’s used a lot in young children since they are the biggest age group with that complaint. Hope that helps!


(sneathbupp) #11

I’m sorry you are struggling. I choose MDI and finger sticks, though I know the reports are showing many peopke (kids especially) do better on pumps than MDI. If there is scientific curiosity maybe get some study data and discuss it together?


(jennagrant) #12

Let her choose. I was scared of a pump for 25 years & finally got one. Now I’d never go back!


(pamcklein) #13

Hi, I don’t know if you’re still checking this, but I thought I’d share a bit of my story. I was diagnosed T1D at age 2 1/2. I am now 55. There were no pumps, CGMs, or pen needles then, Just glass syringes with metal needles. I cried and fought my parents every day when they gave me my shot (it was only 1 a day back then). So, I can see where a pump/CGM would seem like a better choice. However, I also remember my mother getting an “Auto-injector” for me to try to make the shots easier to take. I was terrified of the thing (still am in fact!).

When pumps first came on the market I had friends who tried them. They had a lot of problems with malfunctions. I decided I’d never let my body be run by a machine because machines break.

I finally gave in and tried a pump 4 years ago. I also tried a CGM at the time, but that particular CGM did not work for me. It kept giving me false lows. About a year later I tried a different CGM which works a lot better. Anyway, to this day, I don’t trust either one. I still check my BG at least 6 times a day with my meter, and I still find discrepancies. So, my warning, if you will, is that no treatment is perfect.

I get the feeling from what I’ve read here that you feel your daughter’s BG would be better regulated on a pump. I think that is a misconception. At her age, her activity level is probably high, her hormones are changing, and her emotions are probably all over the place. Her BGs are going to be hard to control. For me, making adjustments were easier on the shots than they have been on the pump. I’m going through the “change” and am having a much harder time getting regulated on my pump than I did when I went through puberty on shots. So, i would advise you listen to your daughter and what she wants. Remember, she has to live with whatever decision is made. You’re just there to help her on this path. If she’s willing to try a pump, fine,but let her decide.

As others have advised, listen to her concerns. There are several choices for how to treat her disease. Don’t focus on only one. Help her look at her choices and let her choose what she is most comfortable with. For me, I finally gave in to my family and doctor and went on a pump. Am I happy with that choice? I’m still deciding. I never minded the shots. People think they’re horrible, but I never did. I actually prefer them. I’m still in my “honeymoon” with the pump and CGM though, so maybe I’ll change my mind eventually. Or, maybe I’ll go back to shots. Time will tell!


(tuckerendlich) #14

Hi Guys!
I have been diabetic since I was 9 and now im 17! I have the Medtronic minimed 670G and before this I had another minimum and I love them! they make your life so much easier! if the loud noises bother you, you can put them on vibrate. and with the new 670G you can shut the sound off if you want on the meter and you can turn it down on the pump its self. im not sure about the CGM because I dont have it yet! but I will be getting it soon! I say try the pump with out the CGM first then when you get use to the pump then add in the CGM… I hope I helped a little bit!


(Patrick) #15

It is a very tricky situation. I can only speak from my personal experience.
I was diagnosed at 18 months (the age of Pork insulin), and the pump became available about when I turned 16 or 17. I was DEAD SET against it. I didn’t like the idea of “something attached to me” all of the time. I was on the swim team and I couldn’t imagine having to take it off / reconnect every time I had an event.

As time went on, and I went to college, I realized how much of a greater impact NOT having a pump was, both socially and physically. It wasn’t until I was 20, after the appearance of an acute Kidney issue, that I decided I would try it. I realized that the health benefit outweighed the (pereived) impact. For the last 17 years, I have never looked back! Now on the 670G, I am loving the freedom the pump/CGM is giving me.

My fears of “people will make fun of me” went away quickly. They would ask what it was, I would tell them, and we would move on. Now with things like the waterproof feature of the 670G, it is easy to realize that life is not as impacted as one would think it is - when I swim, I just jump right in! As you point out, it’s one needle every 3 days, instead of 6+ a day, depending on your treatment method. And, with the CGM now lasting 7 days, it’s even less of a burden!

Mainly, the messaging from my Parents / Doctors / CDE that helped me make the decision was:

  • It takes away the worry / pain of taking a shot every single time you eat something / test.
  • No more answering questions as to why you carry needles and a ton of supplies aroudn with you everywhere
  • (At the time) a lot of the issues you are having with your eyes, etc will stabilize and not get any worse.
  • (Because I was into comics) You’ll be like IronMan and have a smart computer helping you make all of these decisions. No more guess work!

Granted, at 20 years old, I was devoid of the problematic issues of being in your daughter’s age group. But, I can tell you, it will get better, and she will come around.

I am sorry that I cannot offer advice on how to convince her, but I hope my story will help you rest assured that she will come around. It just may take some time.


(Patrick) #16

@tuckerendlich, you will LOVE the CGM! Auto Mode is the best thing to ever happen to me! T1D for 36 years here, and I think it’s a miracle! Good luck!


(FriendlyGuy64) #17

That is her decision…Please do not nag her…She may change her mind some day… Pump is NOT for everyone due to many reasons. I believe that she should have CGM since without CGM, low blood sugar can make her to pass out or die without a warning. Also, CGM does warn her to watch out for high blood sugar level or DKA. I still have insulin injections and glucose meter. I have T1D for 50 years without any complications. Do not forget type 1 diabetes is like a roller coaster. It is extremely difficult for people with type 1 diabetes to control their blood sugar levels perfectly.


(datamystic) #18

Been there, done that with my 12 year old. Pump - 12 months, then refused. No we use and swear by PredictBGL App and Freestlye Libre combination. App works with or without Freestyle Libre, but app predictions are better. No more sleepless nights.


(tuckerendlich) #19

haha thank you! the only reason I dont have it yet is because they failed with the 670G and then the Hurricane that hit them… so it is all on medtronic!!


(Jill) #20

Have you tried wearing a dummy pump with her to show her and learn with her what it’s like to wear a pump? I know that my mom did that for me when I was researching and it really helped her to understand how frustrating it was to wear a pump. At that age her body is changing and I understand how it feels to not want to be connected to something all the time.

I can’t say it enough. My life has changed in the past four months. I am on an OmniPod. Life is 100% better. It’s a pump, but it is TUBE free. There are no cords, there is no wearing a pager-like device (not that she would know what that is). But you are not connected to anything. You literally put it on and FORGET about it for three days. You cannot feel it on your body, it does not hurt, it does not snag on door knobs, clothes, etc. You do not have to have special pockets to clip your pump to. It’s water proof. It’s incredible. I do not work for OmniPod, but I wish I could shout it from the rooftop how much of a life saver it has become.

All I have to say is see if you can get her, and yourself, to try out their program of wearing a fake pod for three days. It may change her mind.

Best of luck, I truly do understand the desire to be free of a medical device. It is not an easy battle. She will piece it together!