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Not testing

redjobo

Member
Messages
6
Type of diabetes
Type 1
My nineteen yr old son, after being diagnosed for 3 years has suddenly decided he doesn’t want to have diabetes and has stopped testing. I’ve talked to him, his consultant has talked to him. He has started counselling but none of this is having an impact. Has anyone experienced this. Please help. His hba1c is in the 60’s. I am worried sick about him.
Joanne
 
My nineteen yr old son, after being diagnosed for 3 years has suddenly decided he doesn’t want to have diabetes and has stopped testing. I’ve talked to him, his consultant has talked to him. He has started counselling but none of this is having an impact. Has anyone experienced this. Please help. His hba1c is in the 60’s. I am worried sick about him.
Joanne

May I ask what meds he's on?

If he's a T1 on insulin, then is he still injecting but guessing how much to take?

Welcome to the forums by the way!
 
May I ask what meds he's on?

If he's a T1 on insulin, then is he still injecting but guessing how much to take?

Welcome to the forums by the way!
Thanks. He’s on Novarapid and Lantus. He is still injecting but is very prickly if I even mention anything to do with his diabetes.
 
Hi @redjobo ,

Welcome to the forum.

Sounds like the "burnout" to me? Possibly coupled with that rebellious "thing?"

Is there anything your son is passionate about? Does he drive? One incentive for me in my yoof (which still stands today.) is holding onto my privelidge to drive..

Would it help if your son joined up here?
He could talk. Even if it was initially a "rant?"
 
Thanks. He’s on Novarapid and Lantus. He is still injecting but is very prickly if I even mention anything to do with his diabetes.

Ok well I you can take that as a positive. I assume that as things stand it's difficult for you to find out why he's become averse to testing?

Is he using a finger pricker ? If you're in the UK (and living in the right area) then Continuous Glucose Monitoring became available on the NHS from November 1st. Not all surgeries are making it immediately available though, if the finger pricker is the issue, it's worth asking.

On a different tack, diabetes burnout is quite common and can make people feel like they don't really care ......

http://www.joslin.org/info/avoid_diabetes_burnout.html

............so it might be worth reading up on this to see if it fits what you're experiencing.

I myself have days when I do the absolute minimum that I need to do to stay safe on the road so it may just be a passing phase.
 
My nineteen yr old son, after being diagnosed for 3 years has suddenly decided he doesn’t want to have diabetes and has stopped testing. I’ve talked to him, his consultant has talked to him. He has started counselling but none of this is having an impact. Has anyone experienced this. Please help. His hba1c is in the 60’s. I am worried sick about him.
Joanne

I have also decided I don't want to have diabetes. It wasn't a sudden decision, nor is it an unreasonable decision. If you can find anyone who does want to have diabetes I would be amazed. I can guarantee that not testing doesn't make it go away though. I'm glad he's started counselling and I hope that will help him conquer his aversion to testing. In the meantime have you discussed why he doesn't want to test? Is it because the finger pricks hurt (because, they do)? Because a better lancing device or a better lancing technique might help with that. Is it because he uses his fingers for something like guitar and finds the finger pricks impacts on that? Because again a better lancing technique can help with that. Or you could try the libre for blood sugar results to allow a bit of a break from finger pricking. Of course libre isn't recognised by DVLA, so if he is driving he must test before getting behind the wheel. Is he not testing because he doesn't want to see the numbers? When he was testing what kind of numbers was he seeing? Has he been on a DAFNE course or read "think like a pancreas" so he can be confident he knows what to do with the results?
 
@redjobo , many of us get frustrated with T1 because it's so damned unpredictable.

You can spend ages carb counting, calculating doses, accounting for x,y,z, but it'll still throw a blinder, so people sometimes end up saying what's the point.

I've felt like that at times, but one thing which made a big difference for me was getting a Freestyle Libre about a year ago.

Unlike strips, which just give a little snapshot, libre shows the full picture and gives lots of steers on how bg is moving. It just makes it so much easier to see a possible hypo coming and do something about it in advance to stop it happening. Lots of other uses too.

It gives me a much stronger sense of being able to steer and guide my T1 instead of it being in control of me and me having to react to it.

It's the sense of not being in charge that leads to burnout. Being able to see and proactively deal with changing bg with libre gives control back. I'm content with my T1 now.

It's £100 per month privately, but there's some stuff going on at the moment about them being free on the NHS, but no-one knows for sure how that's going to pan out.

Plus, there's a way of tweaking it to send results to a fancy phone app called xDrip+ Give a boy a new toy and there's a fair chance he'll show an interest!
 
Hi @redjobo ,

Welcome to the forum.

Sounds like the "burnout" to me? Possibly coupled with that rebellious "thing?"

Is there anything your son is passionate about? Does he drive? One incentive for me in my yoof (which still stands today.) is holding onto my privelidge to drive..

Would it help if your son joined up here?
He could talk. Even if it was initially a "rant?"
Yes he does drive but he’s at the point at the moment where nothing is getting through. I’m in despair
 
@redjobo , many of us get frustrated with T1 because it's so damned unpredictable.

You can spend ages carb counting, calculating doses, accounting for x,y,z, but it'll still throw a blinder, so people sometimes end up saying what's the point.

I've felt like that at times, but one thing which made a big difference for me was getting a Freestyle Libre about a year ago.

Unlike strips, which just give a little snapshot, libre shows the full picture and gives lots of steers on how bg is moving. It just makes it so much easier to see a possible hypo coming and do something about it in advance to stop it happening. Lots of other uses too.

It gives me a much stronger sense of being able to steer and guide my T1 instead of it being in control of me and me having to react to it.

It's the sense of not being in charge that leads to burnout. Being able to see and proactively deal with changing bg with libre gives control back. I'm content with my T1 now.

It's £100 per month privately, but there's some stuff going on at the moment about them being free on the NHS, but no-one knows for sure how that's going to pan out.

Plus, there's a way of tweaking it to send results to a fancy phone app called xDrip+ Give a boy a new toy and there's a fair chance he'll show an interest![/
 
He loves technology and his constant has said he will put him forward for the Freestyle Libre when it becomes available. I cannot self fund as I am a single parent and he is still in FTE so not earning.
 
I have also decided I don't want to have diabetes. It wasn't a sudden decision, nor is it an unreasonable decision. If you can find anyone who does want to have diabetes I would be amazed. I can guarantee that not testing doesn't make it go away though. I'm glad he's started counselling and I hope that will help him conquer his aversion to testing. In the meantime have you discussed why he doesn't want to test? Is it because the finger pricks hurt (because, they do)? Because a better lancing device or a better lancing technique might help with that. Is it because he uses his fingers for something like guitar and finds the finger pricks impacts on that? Because again a better lancing technique can help with that. Or you could try the libre for blood sugar results to allow a bit of a break from finger pricking. Of course libre isn't recognised by DVLA, so if he is driving he must test before getting behind the wheel. Is he not testing because he doesn't want to see the numbers? When he was testing what kind of numbers was he seeing? Has he been on a DAFNE course or read "think like a pancreas" so he can be confident he knows what to do with the results?
He does play guitar and drums - never thought about that one. What is a DAFNE course?
 
He does play guitar and drums - never thought about that one. What is a DAFNE course?

A little info on DAFNE here.. http://www.diabetes.co.uk/education/dafne.html

Your son might find a fair few of us musos on here doing a reasonable job juggling diabetes with an "R&R" lifestyle..
Like a drummer's preference to kit set up, there is no one size tee shirt with Diabetes.
However, he may get some first hand advice he can take out on the road with him..!
 
I use a new lancet every time - they are cheap enough, and have never been able to tell which finger I used after a few seconds, plus my guitar playing has improved with lower blood sugars helping to keep my brain clear and my fingers fast, and hard too. With higher blood glucose my fingers swell and soften - not good.
 
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