Need to put her in the driver's seat because this isn't working

Type 1 and LADA Parents of Children with Type 1 Diabetes
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Hi all,

So my dd is 12 now and was diagnosed just before her 6th birthday, but we are oh so frustrated! She wears a Dexcom and has the T-Slim pump but even thought she is an amazing and wonderful kid is so many other ways, we have never been able to get her to care about her diabetes. She’ll bolus sporadically, will never ever check her blood, (so happy for the t-slim, but doesn’t help if she won’t bolus!!!) So basically it’s me and her dad nag, nag, nagging her all day… to bolus, to check her blood, to fix herself and we are ready to pull our our hair!

She avoids alarms, ignores her pump and boluses randomly like I mentioned. Take today, her transmitter died yesterday and so we were late putting on her new one and even thought I’ve been after to her to bolus all day, we just checked her bg right now and it’s 32 (540)!!! It’s scary!

So how can I put her in the driver’s seat? I was thinking of going back to log books so she can see the numbers, but all log books are made for mdi, but maybe I should make a chart and make her fill it out… just so she can see. I know type 1 is hard, so have always resisted punishing her, don’t need her to resent it more, but is that what we’ve come too?

How can we possibly encourage her to do better and like I said, put her in the driver’s seat?

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I definitely wouldn’t punish her. My mother stopped helping me when I was 12, and I was not ready. I ended up with hba1cs in the teens for 15 years, and I no longer am on speaking terms with my mother (there were other issues, but the diabetes caused a lot of resentment). Personally, I don’t see what the rush is. She still has to figure out puberty and won’t leave the house for another 6 years. If she misses her childhood taking care of diabetes, she will act recklessly as an adult.

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I haven’t ever been on a pump but I did start taking over my diabetes management when I was about 8, however I did that with complete oversight by adults i.e. my mom or brothers etc. What I would suggest is watching her do her boluses while you make dinner or get snacks ready and don’t give her the food until she’s taken done it. It’s about teaching her responsibility not punishment. A diabetic alert dog may be a solution that will encourage her to start taking care of herself. If you want more info on either training a dog or anything related to that just let me know.

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So glad I’m not a parent of a kid with this damn disease! Though my own daughter, well… let’s not go there. Issues.

Anyway, I agree, punishing will just make it worse on many levels. Here’s the thing though: it’s really hard for a kid to get her head around the abstract problem of complications that will take years to show up, and meanwhile what’s right now in front of her is puberty, peer pressure, desperately needing to be normal and not have this weird-a** disease grossing out your friends and screwing up your social life.

OTOH, 540 is in DKA area, not some years-off abstraction, and as a parent you don’t want to find yourself rushing to the ER with a kid who’s barfing and gasping because her own blood has gone toxic on her, or because she’s fallen unconscious on the street or (much worse for her) at a party. Those are scenarios she should be able to recognize aren’t going to be any fun for anyone, least of all her. Would it be possible to strike a deal? Like, let’s just please keep your BGs in a non life-threatening range? Say over 80 and under 250 or so? Not going for perfect, just going for let’s-stay-out-of-the-hospital, and maybe back that up with the results shown in her Dexcom Clarity reports (you should have access to those). I think if you start from something you both agree on (bafing, losing consciousness and going to the hospital really suck) and you’re just shooting for that, that may help put her in the “driver’s seat” without her even noticing.

A LOT of T1 kids have a rough time through adolescence for obvious and multitudinous reasons and don’t start really pulling it together until their 20s. A1Cs in the 7s or lower are nice, but the main thing is the main thing, and at these ages just getting them to survive until they start to mature is a pretty creditable accomplishment.

ETA: Dunno if you’ve talked to her about it but as a non-T1 you should be aware that hypo fear is a thing. I went through a really long time of “I just don’t want to think about this stuff” and like anything the more you practice the more comfortable you are with it, and the less you practice the scarier it all is. The fear of having a crash in the midst of some activity with your friends and drawing attention to your scary differentness is a big disincentive to correcting or bolusing adequately to begin with.

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Does she do carb counting, or do you tell her count s? I know someone that would write down the carb counts and put on table next to her sons plate. At first, she would check pump history frequently, but this was easier with omnipods and separate controller.

There are several apps for food and logging. Would she be interested in that?

Does she know any other T1D kids? Any camps or events to help meet others?

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There is a young man on you tube that talks about his diabetes,his show is called Tame Type One so perhaps finding someone in her age group that talks about diabetes would help.He is low carb by the way.
Or if she is interested make her own you tube videos?
Just some ideas for mulling over.

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I have zero insight into raising a young T1D as I was not diagnosed until the age of 30. @Firenza’s mention of a diabetes alert dog interested me as I’ve lived with a hypoglycemia alert dog for nine years now and it’s been nothing but good for my physical and mental health. I do know that these dogs are often placed with teenagers but I’m unfamiliar with the success rate of that practice.

Maybe ratcheting down the overall responsibility stakes from a dog to pet fish might be an answer. This quirky news posted to DiabetesMine from the recent American Diabetes Association Scientific Sessions conference caught my eye.

Show Us the Fish!

One of the quirkiest presentations came from Dr. Olga Gupta of the University of Texas Southwestern Medical Center, who did a study showing that caring for pet fish can help adolescents with higher A1Cs who weren’t previously managing their diabetes as well as they should be. She found that A1Cs improved by a half percentage point in those who took care of their pet fish, in association with managing type 1 diabetes.

The routine: Upon waking up in the morning, teens fed the fish one pellet and also checked and logged their own glucose levels; the same bedtime routine, and once a week they changed the fishtank water and also reviewed their BG logs with a healthcare provider. It was a fun pilot study of using an “Innovative Simple Intervention to Improve Adherence” that Gupta noted could be easily scaled to struggling T1D teens and young adults everywhere.

I agree with @DrBB that putting in place relatively loose goals that serve as ultimate safety guard-rails would serve you and your daughter well. Perhaps this is a time that could be helped with some professional behavioral talk therapy for both parents and child.

Don’t give up your effort! The stakes are high and your daughter will someday come to realize how important the values of self care are to happiness in life.

I like the diabetes camp idea since our peers are often a great elixer to open our eyes to things we might quickly dismiss otherwise. On that same note, as parents you could benefit from similar support. Perhaps you could check into a parent’s group whether local face to face or virtual online.

Stacey Simms is a mother of a teenage son with T1D. She has a weekly podcast and often discusses parenting issues. One of her regular guests is Moira McCarthy, a mother of a daughter T1D diagnosed in childhood and now an adult. I find their discussions interesting.

Good luck with this challenge! I know it’s not easy and wish you the best.

By the way, taking ownership of any of life’s problems is a powerful notion and critical to success and happiness. This is not easily done but oh so worth the effort. When you own your diabetes, you accept the full reality of it, warts and all. The recognition of that reality is both sobering and empowering. This is not easy to do and even adults have some trouble with this idea. But it’s definitely something to keep in mind.

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hmmm…this is always a tricky question. It does pop up with some frequency.

Is it possible that she runs high pretty regularly and so doesn’t get real symptomatic from the highs? 540 would knock me out. I wouldn’t be able to function. No one wants to feel sick. So, its possible that she doesn’t feel very bad with high BG and thus pays them little attention. People experience symptoms differently. So, some people feel really, really bad with high BG, but some people don’t even really notice. People have different physiological experiences.

How does she do with low BG? Can she sense it well?

Do you think she has anxiety associated with her illness? Most of us have more anxiety about either highs or lows. Is it possible that she has anxiety associated with lows, and so prefers to run high?

You might consider getting her into a psychologist with a diabetes specialty as a starting point. Those types of Docs exist, and it might not hurt. Ask her how she would feel about that. She might have to see one independently, and then you all might have to see the psych as a family session because this obviously involves you and caregivers are under a tremendous amount of stress in these situations. Its awful tricky. Chronic illness management puts burden on family. Its good that you are attempting to worth this out. Thats much better than letting it get away from you and having regrets down the line. You can only do your best. The best person to take care of your daughter will be your daughter. It will be 1,000 times more difficult for you to manage her care than it will be for HER to manage her care.

Could just be typical kid, lack of conscientiousness, but it is something that needs to be dealt with.

Just out of curiosity - how would YOU feel if she ever got so high that she needed to be hospitalized? How high would she need to get before you took her to the hospital? That doesn’t sound like much fun, but sometimes letting things play out naturally can help drive the point home. 3 days of high BGs and hospitalization might be preferable to a future with 10 years of mismanagement. Nerve wracking, but what are your thoughts?

P.S. I was a pretty conscientious kid with regard to diabetes around her age, so it is always a little tough for me identify with and I don’t think I have any hard and fast answers for you - just trying to brainstorm. It is one of the most difficult diabetes problems that people ask about, I think. You are obviously doing your best, and ought to be commended for that.

I really like @Terry4 's idea about sending her to one of the diabetes camps. Perhaps being around a bunch of kids her age that are more self sufficient would help normalize it for her (or, embarrass her into getting up to a minimum standard of self care). It doesn’t start in my area until August. http://www.diabetes.org/in-my-community/diabetes-camp/camps/needlepoint-1.html

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I totally second @Terry4’s diabetes camp idea. It was the most fun I had ever had being able to around other T1D’s and they do teach you to take care of yourself in an environment that makes it more fun. Have you ever watched any of dreamflight6000’s videos on Youtube? Her son has been a T1D since he was 2 and the way she handles his diabetes care is hands on while letting him learn how to take care of himself.

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I trained my own diabetes alert dog and he is impossible to ignore. He alerts for highs and lows and it only took a couple of months for him to start doing real life alerts. Having the responsibility of a dog often makes kids more responsible in other areas of their lives and it doesn’t have to be a special professionally trained dog that goes everywhere with you either, as long as they can smell the BG changes they can do the work.

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I also trained my dog, but to respond to dexcom alerts. On G4 receiver I used the Try it option to sound the alerts, and reward when he came to me and nudged. Not sure if G5, G6 have equivalent.

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I think camp is a great idea. I thoroughly enjoyed it, and it benefitted my mental health to see other teenagers with similar problems to mine. However, unless my experiences were abnormal, i don’t think the majority of kids who go to camp are really “in control”. Most of the ones I knew made me look responsible and put together. We once had a conversation about how long we had gone without taking any insulin. I was the shortest at 2 days; one girl had gone 3 weeks without a drop of insulin. Most were in and out of the hospital on a regular basis. It’s also where I met my first diabulimics. I didn’t know it was called that then, but more than one girl had skipped multiple doses of insulin in order to lose weight. I admire the other posters for being responsible, and maybe I just got in with a bad crowd (every year for about 5 years, different girls), but I think you’re average teenager with diabetes is struggling to survive; they’re not like the people on this forum.

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Hey all, I can’t thank enough for all your kindness, encouragement and suggestions! Wow, there is a ton of good stuff here!

I really wish we could get her a diabetes dog, that would be a dream. We have four kids here and I know they would all love to a even just a normal pet dog, but my husband is rather anti-pet, but this might be something worth talking about again. Even if it wasn’t a diabetes dog, it would be nice for her to have something to care for. But we do have fish! Maybe I need to get her to take care of them like in that study, worth a thought.

And it’s weird because she does feel her lows, but it sure doesn’t seem like she feels her highs, or if she does she won’t admit it. Now that she is 12 we all really notice when she is high as she becomes a super unpleasant person, and I have a feeling it’s because of hormones. But thank goodness even when she is really high, she doesn’t get ketones… unless she hasn’t had ANY insulin. But if she’s wearing her pump and even just getting basal insulin, her ketones never seem to get above .2

The ONLY time she had real true ketoacidosis was at Diabetes camp, go figure! It was about 3 years ago and it was her first time there, but when she had a shower before bed she suspended her pump and forgot to turn in back on, and it went unnoticed by staff, and she is amazing at ignoring alarms. She woke up at 5:00 am vomiting. But at least she had dr’s and nurses to care for her! But she wouldn’t go back to camp because she said she was homesick when she was there and we didn’t push it. :slight_smile:

We do need to get more involved in the things that JDRF puts on in our area, the only kids we know around here that have type 1 are boys, but I can see how a friend would help.

And I like what @Drbb

And honestly, I know I just want a magic fix to make this all better, and that’s not reality. What is reality is that we might as well learn to do this one day at a time, and when I feel over-whelmed and scared, then I come here and vent and you guys give me amazing advice and ideas and encourage us to just keep at it, because what choice do we have?

Thank you all so much. :heart:

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I was diagnosed at 10yo, back in the Stone Age before pump’s and CGMs. I’m presently on a Medtronic pump and CGM but truthfully the insulin pump and CGM are a continuous pain in the neck. It seems the pump and CGM are high maintenance and after awhile I get angry at the many alarms. I’m just wondering if an extended pump vacation and going back to MDI and no Dexcom might work better.
Have a long discussion with your dd. Why is she ignoring the alarms? Why doesn’t she bolus? Does she view the Tslim as a convenience or a nagging hassle? Does she view the Dexcom as a big tattletale of her behavior? Would she rather try a different method of diabetes control? If she goes the MDI route with no Dexcom, she must agree to at least 4 bg tests a day and keeping a log book.
When she’s home, she can’t eat until she injects her meal bolus.
With a shot of long acting once or twice a day, she won’t get to DKA even if she forgets to bolus for a meal.
Maybe if she tried a more primitive method of control for awhile and saw it was even more difficult, she’d return happily to the Dexcom and the Tslim. Sometimes you don’t know and appreciate what you have until it’s gone.
Best of Luck!

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Alarm fatigue is a real thing. It contributes to diabetes burnout.

No one likes to play a game where they see their performance as poor. What keeps my interest in the daily diabetes drudge is my ability to play this game well.

While I wear all the latest diabetes tech, the thing that makes the single biggest contribution to my daily success is limiting carbs in my diet, especially processed carbs like bread and cereal. Others have success with a low-fat, whole-foods, plant-based eating style. Do the experiment and see what you can learn.

When my blood sugar is in range and steady, my spirit brightens. It it is the perfect antidote to alarm fatigue and diabetes burnout.

I see perfect as impossible but better is a great spot to land.

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I was surprised to see virtually no difference in a1c’s for MDI vs the pump. I had the Medtronic pump years ago before the Cgm, and was tired of it falling off after 1 day, or falling off during work without a spare, etc. The cgm improves her a1c, but only if she boluses correctly when needed… some insurance companies won’t switch between tresiba, insulin pens, pen needles, etc, easily. My old insurance was either or…no vacation option, however, insurance companies are always different. I found knowing your individual numbers are the most important aspect of decent control. Carb to insulin ratios, and knowing how many units for hyperglycemic corrections. You can also try to customize her alarms with movie quotes, etc…xdrip allows MP3s for different alarms. I’ve been using a cgm (eversense) and MDI for the past 5 years…I just never liked the pump, and tresiba works great for me.

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Thank you for your suggestions. I was writing about my alarm fatigue for Leelaa’s daughter. I get annoyed but always respond to the alarms and my T1 is under tight control. I would never go back to MDI myself but sometimes the pump isn’t the right thing for everyone. Maybe something different is just what’s needed for Leelaa’s daughter.

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It’s likely that her daughter isn’t playing in a range of super precise control, so a pump has very little value. Syringe insulin would be just as effective. But, for sure, I would keep the Dexcom sensor. Parents could add on Nightscout since they are doing so much monitoring anyway. That might actually allow them some freedom to step back and ensure that they are only nagging when they need to. Might give the illusion of independence to the daughter.

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I would love to know more info about a support dog. I was diagnosed at 35 and I turn 50 this year. Back a few years ago I could tell when I was going low. Now, I don’t. I wear a Medtronic pump which alarms for lows or highs but when I’m asleep I don’t hear them. So I’ve had some bad experiences with lows. Just curious if this would be something that would help. I’m an animal lover too.
Thanks
Lynn

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Attention Moderators: if you think this post is too highjacky for this thread then please move to a new topic, Thanks.

If you already have a dog I would try training it to alert. It really is a fairly easy task to train and if you only want it for lows while you are sleeping then you don’t need to do all of the public access stuff unless you travel a lot and need a well behaved animal for hotels and whatnot. You will need some dental cotton rolls like these

and small jars with holes drilled in the lids. Next time you go low, before you treat the low stick several of the rolls in your mouth and thoroughly saturate them with your saliva (yes ew) then spit the rolls into a ziploc freezer bag and label with the date and what level your BG was at then freeze and take one out for training and keep in the fridge (it will last a few days.

Put the roll in one of the jars (make sure there isn’t anything scented on your hands that could confuse the scent of the low) show it to your dog, if they sniff it say “good low” and reward with a treat. I used cheese to train for BG detection and that is the only time my dogs get cheese so they learn quickly because cheese seems to be the treat that really gets them excited. Eventually you will start waiting to reward them with the cheese until they start making a fuss. My dog jumps on me but barking or pawing etc. will work as well. If you want a specific alert then you will have to train for that particular behavior.

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