My 12 yr old daughter was diagnosed with T1D at the age of 4. She started wearing a Dexcom CGM soon after diagnosis and an Animas Ping the following year.
We recently upgraded to the G6 and will have to switch to a different pump next year, likely Tandem.
I am a retired mechanical engineer and I enjoy website design and a little light programming. My husband is a software developer. We are both major geeks.
I quit working to be a stay at home mom and have homeschooled my kids for four years.
Currently struggling with letting my daughter be with her friends without us around because she isn’t paying attention to Dex alarms or checking BG.
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Welcome! With your background, you certainly will fit in with this crowd.
My son was diagnosed at 12, and is currently 15, so I have seen quite a bit.
When you say she isn’t paying attention, do you mean she is getting so low that she isn’t able to function, or that she is allowing herself to go high while playing with her friends?
If it is the former, then I would be worried. If it is the latter, then, in my opinion you need to let her have some room to be with her friends.
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It is mostly the latter. Whenever we give her that room, she ends up with a BG of 500, feeling sick, with us having to deal with the mess, often all night. This happens every single time we’ve dropped her off for an afternoon activity or sleepover with her friends. Even when an adult reminds her to check or tells her that her Dex is beeping, she doesn’t check.
On top of that, we think that she is starting to lie about checking and she’s not doing what we’ve agreed on right after taking about it, so there is a major trust issue.
Also, even when she is home, she constantly “forgets” to bolus and “doesn’t hear” her Dex alarms.
She doesn’t pay the thousands of dollars for the equipment or stay up all night dealing with her crazy blood sugars. We do. I feel that she should be able to glance at the Dex screen and push a few buttons on the pump. She’s been living with this for 8 years and has been able to do everything on her own for 2. Now she wants to be able to go and do things without us and she’s totally dropping the ball.
I want to add that we’ve discussed with her what she wants and needs. She says she doesn’t need our help, rejects every suggestion we offer to provide reminders and support, and then continues to go on the same way.
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We have, fortunately, been in the other camp. My son took complete control around 13 and has made every treatment decision since then. At his request, we even wake him up in the middle of the night and allow him to make the treatment decisions, unless he has an important test the next day, then we do it using his current algorithm. He plays sports at a pretty high level, and knows that bg control is important to him.
Unfortunately, we know that your situation isn’t all that uncommon. I do know that if you daughter is anything like my son, the more you fight, the more resistant she will become. Does she have any diabetic mentors around, that can have the conversations you want to have?
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I agree on fighting being the wrong approach. On the other hand, we are responsible to keep her safe, so its hard to know what to do.
About a year ago, we started to really back off because she was sighing and rolling her eyes at every reminder to check. Her A1C has gone up a bit, but not bad and we want her to have freedom and control over her diabetes.
She did just go to ADA camp at the beginning of the month, but I don’t know of any mentors here. I can set up some time with the social worker or diabetes educator at her next endo appointment, but she doesn’t feel all that comfortable with them. I’ve wanted to connect her with a counselor, but there is no money for that. Not sure what to try.
Yeah, I can understand that. If you think it would help, my son is friends with two young ladies with diabetes that might be able to talk to her. If you are interested I am sure he would ask.
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Thank you, Chris. That would be worth a try.
She is our eager-to-please child who is not rebellious or difficult at all. She is very considerate and responsible except when it comes to this. She doesn’t seem to understand why it’s important or care enough to be bothered. I hate to limit her freedom since she is such a good kid, but we can’t just let her continue this way. that makes this all the more frustrating. I worry that if she isn’t allowed to do things because of her diabetes (we’ve never done this) she’ll really hate it even more and do even worse.
She’s signed up for a 1-day river rafting trip next week. She’s been looking forward to it for months. (She being very independent & responsible with her diabetes when I signed her up.) I’m worried about letting her go now, but I’m sure that she would be devastated if we don’t. I need to figure out how that day can go well.
Thank you for the welcome.
Yes, there is JDRF and ADA here. One of them had a few family get togethers years ago and then I’ve never heard from them. I should check and see if they are doing anything these days. My daughter has attended ADA’s Camp Colorado for 5 years now and loves it. Unfortunately, right after camp this year is when her troubles began.
She is an ace at figuring carbs and bolusing correctly, knows when to adjust her basal, etc. Just doesn’t want to do it lately. I totally get that, but it still has to be done, as you know.
I read the other day about a teen clinic at Barbara Davis Center where she goes for her care. I guess the kids get to hang out and do activities together while the parents do the same. I’m going to find out if she can try that out.
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This is what I don’t get. She ends up feeling terrible, so that should be motivation to keep up with it.
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FWIW, you look like an awesome mom from here. I wish I had better insight into this topic to help, but even without that personal experience I can tell that she is lucky to have you as a mom. 
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I’m so sorry to hear about your struggles. It breaks my heart because I know it isn’t want anyone wants to have happen to kids in their lives.
In my area and other places I’ve lived there’s often a low-to-no cost counseling option. They run a sliding scale, and if there’s no way to pay, counseling services are often still available.
As I read your story, I though repeatedly that getting her to counseling might be a good fit - even if it’s to help identify some of the frustrations your daughter is feeling and how she’s acting on those (which basically amounts to behaviors that are annoying and scary for you and possibly harmful to her body in the long run.)
I’d check into the sliding scale counseling options in your area. I’m sure you’re all busy, but making time to see a neutral party might be helpful. (I say this as I have some friends with a struggling tween and they thought they couldn’t fit it in - but once they did find a good counselor for him, they are very happy to juggle schedules around to accommodate the counseling sessions. 
)
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There are a lot of different ways to motivate kids. It’s just a matter of finding the way that they respond to best.
How involved are you currently in her daily management? Kids get to an age where they start looking for independence, and anything they get from their parents they perceive as “nagging”. I know it’s not nagging, but kids perceive it that way. My mom still bugs me about my BG sometimes. She is 89. 
Some of examples of some various approaches, some may be the right way and help motivate your daughter, and others may not work.
Fostering a spirit of self-sufficiency, and the idea that she can do it better than you:
“I haven’t been doing a very good job with your D control lately. I am starting to think you would probably do better with it if you were entirely in charge of it. Why don’t we let you handle it by yourself a few weeks and see if it gets better?”
Or if she is competitive:
“We will turn it over completely to you. Show us what you can do with your A1C. Let’s see if you can beat the best we’ve ever been able to do with it.”
Or the idea of a little more freedom from the mundane routine:
“You kind of have a general idea of how much insulin to take for different types of meals. You can get a good idea of carbs and insulin, you probably don’t need to count them exactly. Let’s just try to get close”
Or maybe a little incentive with allowance:
“Nothing high or low within 2 hours of a meal gets you a bump in your allowance. [come up with some BG numbers that work for you]”
Anyway, those are just vague examples. Find something that you think will help motivate her. At this point, it is all about her motivation.
One thing I think that helps a lot is to not stress too much over all of the routine. Just like you wash your hands before you eat, you just take insulin. It is just another simple thing you do. It shouldn’t be made any bigger than it is. Really, a few button pushes on your pump (is she on a pump?), and then you can eat. It shouldn’t be made to feel like the world is stopping for a huge event.
When I was a kid, the common thing I’d hear before meals was always just a little reminder of the time, so I could take my insulin ahead of the meal. “Eric, dinner will be ready in 30 minutes if you want to take your insulin now.” Just that simple. If I didn’t take it, I’d feel crappy. That was all the motivation I needed. But we are all different, so you just have to find the way she responds to.
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Hi. 
I kind of have two angles here that probably won’t help you much. First is the mom angle. I have three sons, none of whom have diabetes, but my oldest son, who is an adolescent with autism was also diagnosed with celiac disease. Truly, adolescence has been the scariest of all his categories. I had to learn, many years ago, that pushing, punishing, controlling, threatening (basically all of the good stuff) just wasn’t going to work with him. I wasn’t going to be able to make him. So I tried the backdoor—to encourage good behaviors through a reward system, and rather than emphasizing the negative, which he could ultimately hold over me, I would emphasize the positive… to his own benefit. I have no idea how this would look in a relationship where diabetes is the concern. Maybe it wouldn’t work. But I think about some possibilities… she’s excited about going on this trip so maybe there would be a point system for every time she looks at her Dexcom as an example. Im not doing a good job of this, but the idea is to build upon the idea that good behaviors yield good… things. My other angle is as the diabetic who knows ALL ABOUT refusing to tend to my numbers. I was the ULTIMATE alarm-clearer and could go days without testing. A 400 (or even 600) wouldn’t concern me other than to build more resentment over having the disease. As part of that pattern of behaviors for ME (and hopefully not for your daughter) was a self-injurious element. Self-sabotage… it was part and parcel of the neglect. I absolutely don’t mean to tell you these things to frighten you but mention them because the patterns are very familiar. It might have nothing to do with where your daughter is or where she is headed.
I did all of those things as an adult. Even as a parent. The transition to diabetes was difficult, and I think some resistance and bitterness, or whatever other negative emotions she may be experiencing, is probably a normal stage. IF that’s the case (and it’s possible my own thinking is just distorted), the question is how to help contain it and help her learn control. Much of what I went through then was a result of my thinking that diabetes was a life sentence, and much of my desire for control now is a result of having learned there’s actually plenty of freedom in it.
I have a mom in another group who is going through this with her own daughter, a newly diagnosed 19 year old. Honestly, I can’t imagine how hard it would be to experience. I hope whatever I’ve written hasn’t left anything negative with you. I meant it to be insightful and am afraid maybe it was not that. I also hope you all find a common ground and are able to move past this stage as quickly as possible. Please let me know if I can scare you any further or say anything else that doesn’t help. 
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I can relate a lot to your daughter here, reminds me of my tweenage days. I was frustrated about having to constantly be careful of things, I was bitter about not being “normal” like my friends. Sometimes even embarrassed about checking or pulling my pump out because it brought attention to the fact that I was different. I also know that I personally ran my bloodsugars higher when I first took control of my own diabetes because I was overly nervous about lows.
If your daughter watches Youtube videos I might suggest she check out videos by diabetic youtubers like Diabetes Danica or Laina Elyse. Most of them show very positive outlooks on life, and tend to discuss tips and tricks about maintaining tight control. The DOC has always been very helpful for me in pulling myself out of diabetes burnout, and hearing advice from actual diabetics, some of whom are also teenagers, feels less preachy than hearing it from your mom, your endo, or a nurse. Just a suggestion!
Wish I had more advice for you, but all I can say is that I was a difficult T1D tweenager too (though I’m 21 now) and in retrospect it was extremely unnecessary!
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Well said.
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Ooooh! Good advice! Diabetes Danica taught EH and I how to apply the Dex to the back of his arm! I was so impressed by her videos! (But I’m a totally dorky 38 year old, so your tween mileage may vary! 
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Hey! Me too! I wonder how many others on here have watched the exact same videos!
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Welcome @sahmcolorado!!! Sounds like you’re really trying to keep your girl healthy, and I want to applaud your efforts! Raising a kid with T1D is hard. She’ll thank you for it someday!
Now, I’m going to somewhat contradict a few people on here. I’m 31 years old and diagnosed at age 8, so I’ve definitely lived through the teenage years with D.
The biggest advice I could give is to not limit her food options. Instead, empower her to figure out how to make foods work (@Eric made some great suggestions). IMO, the harder you push to make her conform to the diet you want, the more she’ll push back against it.
My parents never restricted my diet (as a teen… different story before Humalog came out). I tried my best as a teenager (no cgm at the time so that was a big impediment), but I ate everything my friends ate. I did everything everyone else my age did. I just dosed as best I could, and fixed it when things didn’t go right.
For my 16th bday I told my mom that I wanted a gigantic banana split. My parents bought rain gutters from home depot and served a 16 ft long gigantic banana split in the park. All my friends and I dug in. It was fabulous, and I’ll always have an awesome memory of my 16th. My D was essentially irrelevant. I don’t even remember whether my dosing went well or not which means it couldn’t have gone too badly!!!
I guess my biggest recommendation would be to empower her and help her feel in control.
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