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Maddening T1D non-compliance

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SO frustrating.

Middle schooler dx in May with T1D. I've been telling the kid for a MONTH that their glucose levels were starting to go up, that their "honeymoon" phase seemed to be ending and they needed to get on top of managing things. I was telling the kid LAST week they really needed to be checking their glucose in the mornings, even if they don't eat anything. I've been trying to pull the kid from class to do diabetes education with them. I was telling the mom TWO days ago that the student can die from this, the numbers are trending up, that she really needed to attend the education class at the local children's hospital, etc.

What happens instead? Kid walks in for glucose check before lunch and it reads "Hi." They almost immediately start vomiting. Kid still claims they can't pee enough to check ketones (same story every time they have been over 250 this month - UGH!) even though they peed just fine this morning. 6 units, still "hi" 30 minutes later, 6 more units, STILL "hi" 30 minutes later (under endo direction). Emesis x2 more. Mom arrives, EMS arrives, kid goes to the hospital.

Per kid, they hadn't checked glucose since yesterday at school when it was high (300s, then upper 200s 2hr post). They felt sick last night, ate pizza for dinner, didn't take short acting with it. Fortunately took long acting at bed. Woke up feeling sick, still didn't check glucose. Mom's story? She tells kid to check glucose, but he's always tired and doesn't want to.

...

I know mom doesn't get it (doesn't help that there is a language barrier), and it's a lot to take in and learn. But MAN is it frustrating.

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My teenage grandson got with the program when I had a CTJ talk with him (trapped in the car with grandma on the interstate- I ain't no fool) about impotence and diabetes.

This kid sounds like a perfect candidate for a CGM- any possibility?

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I'd put up with it for now until after this hospital d/c and post hospitalization orders/management plan from MD. If the same behavior continues I'd report it to CPS for neglect. All the reasons and excuses, including "language barrier" is BS - with a capital "BS."

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This is a lot. And you care so very much about this kid, and I salute you for it.

Google "Motivational Interviewing." You cannot care about this more than the kid/family does but if the kid has normal brain development, I bet you'll find something that will motivate him/her.

Then call the doctor who provided the orders. Will it be necessary for the student to come in first thing in the AM to check? Maybe. Should you have to do that? No, but like any situation where the parent cannot or will not cover the AM procedure....sometimes we do things for the good of the student, right? That will also help you at lunch time.

Can't pee for a ketostick? Here, sit with me and drink 20 ounces of water until you can...guarantee that will only happen once.

Good luck!

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This is a lot. And you care so very much about this kid, and I salute you for it.

Then call the doctor who provided the orders. Will it be necessary for the student to come in first thing in the AM to check? Maybe. Should you have to do that? No, but like any situation where the parent cannot or will not cover the AM procedure....sometimes we do things for the good of the student, right? That will also help you at lunch time.

I was just thinking about maybe needing to have him come in for AM checks.

Thanks so much for the suggestions!

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I'd put up with it for now until after this hospital d/c and post hospitalization orders/management plan from MD. If the same behavior continues I'd report it to CPS for neglect. All the reasons and excuses, including "language barrier" is BS - with a capital "BS."

Agreed.

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This kid sounds like a perfect candidate for a CGM- any possibility?

Yeah, he definitely could use it. The local clinic seems to be hesitant/slow to put kids on cgms unless the parents push for it. Also, there's insurance. I'm not sure if medicaid will cover the cgm. I am trying to find some manufacturing coupons for the new Freestyle Libre. Results aren't automatically delivered, but you just have to scan the device. Plus it's the most affordable option for a cgm.

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I'd put up with it for now until after this hospital d/c and post hospitalization orders/management plan from MD. If the same behavior continues I'd report it to CPS for neglect. All the reasons and excuses, including "language barrier" is BS - with a capital "BS."

Yeah, just looked it up. My suspicions were right - medicaid wont cover CGM unless the patient is compliant with the current poc, including at least 4 glucose checks a day. In addition to that, the patient has to have difficulty controlling glucose.

It's bull. I hate Medicaid. They could pay for a freaking cgm for a lot less than a few days of hospitalization for DKA. Plus, it's the non compliant kiddos who would benefit the most.

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The others are right you can't care more than the student or the parent. It is hard but I have learned that the hard way over the years. If you are documenting and trying all that then it seems like a CPS call for medical neglect is warranted. Sorry you are having to deal with this. But sadly it is very common these days.

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Been there! Forth grader diagnosed with DM-II with father a lifelong DM-1. No one at home checking student's BS, and parents not collaborative (they didn't do anything, ever). So I called student's pediatrician, communicated that I had seen student more and more often with vague complaints and no one is checking sugars at home, etc. Pediatrician raises her voice at me and basically tells me to 'stay in my own lane'. I updated my Principal who actually told me that even though I was an RN, that she "trusted the father's judgement because he, himself, had diabetes". [And what do we lowely RN's know anyway?]. I told the Principal that my experience tells me something very bad is about to happen - this was on a Wednesday. The following Monday the student was not at school. Why? In DKA, in NICU, new pediatrician says student had already started to mottle and was hours away from death, and misdiagnosed (student actually a type 1 DM) That was 6 years ago. The father has since passed away from complications from DM-1 and noncompliance. Why even hire RN's if no one actually listens to us?

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Been there! Forth grader diagnosed with DM-II with father a lifelong DM-1. No one at home checking student's BS, and parents not collaborative (they didn't do anything, ever). So I called student's pediatrician, communicated that I had seen student more and more often with vague complaints and no one is checking sugars at home, etc. Pediatrician raises her voice at me and basically tells me to 'stay in my own lane'. I updated my Principal who actually told me that even though I was an RN, that she "trusted the father's judgement because he, himself, had diabetes". [And what do we lowely RN's know anyway?]. I told the Principal that my experience tells me something very bad is about to happen - this was on a Wednesday. The following Monday the student was not at school. Why? In DKA, in NICU, new pediatrician says student had already started to mottle and was hours away from death, and misdiagnosed (student actually a type 1 DM) That was 6 years ago. The father has since passed away from complications from DM-1 and noncompliance. Why even hire RN's if no one actually listens to us?

The others are right you can't care more than the student or the parent. It is hard but I have learned that the hard way over the years. If you are documenting and trying all that then it seems like a CPS call for medical neglect is warranted. Sorry you are having to deal with this. But sadly it is very common these days.

My MIL is T1D (has been for 40 years and even had 2 children!) and one of my best friends as well. I think it just hits really close to home for me. I KNOW these kids can have active and healthy lives, as both of my loved ones have, because of their compliance over the years. The non compliance just really drives me nuts. That and the expense of CGMs and pumps. SMH.

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