@scud – do you have NovoRapid cartridges, pen and needles ready to use as backup? That was what our GP keeps trying to take off our son’s prescription… it is ESSENTIAL to have this kit in case of pump delivery failure. Something to ask about at your next clinic.

We do yes, carry them everywhere, novorapid and the slow acting version too, the problem then was that i got up to do her bloods at 1am, they were 6.2, got up at 5am as i was going out on bike for a few hours and she was a little high at 9.1, so corrected this using the pump, not knowing that pump catheter had clogged (no audible alarm like we usually get with normal failure), she told me she felt a bit sick so i didn’t go out on my bike and by 7.40 she was vomiting everywhere, but because of the 9.1 earlier readin we believed it must be a bug, but all of a sudden her bloods were 28+, we asked the hospital how this had happened and they believe the only answer could be that she had enough residual insulin on board from before pump clogged was only answer. As soon as i saw the 28+, i turned pump off and gave her injection and put her in the car with 999 on carphone as we live in rural Norfolk and it is quicker for me to drive than wait for an ambulance.

Has your son been on the week long DAFNE course? They cover all aspects not just the dosing for food, e.g. when to test for keytones and how to use glucagon. They have a half day session where partners, parents, carers etc. come in to learn about those things too

EDIT Also it gives contact with other T1s. My wife is still in contact with the people on her course and they all meet up regularly.

EDIT2 My wife also had a very bad hypo that involved an ambulance call out when she was around your son’s age (I didn’t know her then but it’s still talked about), but nothing anywhere near as bad since.

So apart from the scan bit, they do the same thing…

No, see point 1 !

Libre does not read blood glucose… it is inaccurate and delayed in its estimation of what is happening in the blood … we use one though… a great tool… but not comparable with a proper CGM.

A CGM is like taking a proper finger prick blood test every 5mins, 24 hours a day, without even thinking about it.

Nicely handled Scud. We’ve hit 28+ due to pump problems before as well… it’s scary… injection as soon as possible works though.

Has your son been on the week long DAFNE course?

No and to be honest he wouldn’t go, again that’s an age thing, but he was never offered it anyway. We recently clanged hospital as the first place was pretty poor, at his initial diagnosis the dietician proceeded to inform him that he’ll be liable to all sorts of nasty stuff if he doesn’t keep his levels right, losing limbs etc, just stupid shock tactics that a 17 year old boy didn’t need days after being diagnosed with a life changing condition.

He has an appointment in April so we’ll be going with him whether he likes it or not. Even if it’s just for us to have a chat to someone separate to Jamies check up.

My son was Injecting for the first year then went to pump. It’s been great apart from about half a dozen handsets (Accuchek Insight) so we will be looking at a different pump come next year as the hospital isn’t issuing them due to problems.

We aren’t yet there with dealing with alcohol – my son’s just not bothered.  We’ve had good support from the hospital, as he isn’t yet in the adult clinic.  He got a rollocking as he’d let his HBA1C go up and they reminded him about ‘driving’ as he was about to book driving lessons.  We got the Blucon nightrider in November, and within 2 months his HBA1C was back to 50 from 63.  The consultant was really pleased, and that was nearly all due to the blucon alerting him for highs.

For the £150 it’s been great. We change batteries about once a month. You just need to buy sports tape to stick it down ontop of the libre.

The libre on it’s own does need scanning with it’s reader so that you can keep the historical data (or indeed your phone using the libre app).   The blucon reads the libre and sends it to the app on the phone. This then uploads to an open source web site (Nightscout) (you’ve got to set it up yourself, but all the instructions are there).  This website retains all the readings as well, so you can print out reports with average bg, trends etc etc.

Libre does not read blood glucose… it is inaccurate and delayed in its estimation of what is happening in the blood … we use one though… a great tool… but not comparable with a proper CGM.

We had problems with the Libre, first sensor was wildly inaccurate, the Libre would read 5.8 and then we’d do bloods as well, and they’d be 2.8.. Then had problem when we fitted second sensor and a big plume of daughters blood p*ssed out of the middle, it then took us 18 months to convince daughter to give it a second try, then the first sensor again was wildly inaccurate.

So we don’t use it constantly now, we use it occasionally when we are carb-fasting her to check the basal setting on her pump to see the “trends” of her BG.

Full CGM options seem limited here at the moment though?

The Libre scans intastatial fluid levels (can’t remember if that is the right term, but it is a 5-minute ‘delay’ from a finger prick test…it reads every minute.

The Libre isn’t approved for driving (yet) as the measurement it takes is a 5-minute delay – so if you scan and it is low, then you hvae been low for 5 minutes before (which I can see why that could/would be a concern).

Not trying to suggest this is better or not, just trying to understand the differences…at present, it doesn’t sound like a huge difference (for me). I may do some investigation into the closed loop CGM from Medtronic so it does connect to my pump and does other things (but that is expensive).

Obviously off-topic from the original post, but this has been useful, thanks.

It’s not just a delay… it is not measuring the same thing, and offers wildly different estimates of actual blood sugar depending on lots of physical factors (temperature being one). Great tool… but nothing like either CGM or finger pricking.

We use the libre/blucon to warn if going low, so it alarms as he starts to go below 4.4, then annoys the hell out of him if he goes above 10. Teens are a bit of a nightmare as they don’t want to conform at the best of times. He wasn’t even scanning his libre in the Autumn – too much trouble to raise his phone from his hand to his arm despite always having his phone with him.  This was it starts to nag him.

He really likes it as he can predict how his bloods are moving – accuracy wise, it’s close enough. The libre becomes in-accurate at lows or highs, but for watching blood trends it’s great. The xdrip app predicts lows and highs based upon the trends, and tells him if it thinks he will be low/high in xx minutes.

T1 is a shit disease, but managed there is no reason one wouldn’t live a normal life.

A good mate of mine is T1, but he’s lost half of both feet – i.e. all his toes have been amputated bit by bit, as it all starts with a small infection that no-one can control. He’s been in hospital for about 6 months in the last 2 years.

Gary, if you like I can have a chat to him. Without going into too much graphic detail, I’ve had/have all the bad things that can happen with poor control (I’m waaay better now, the folly of youth and all that…) I’m also just about young enough (32) to remember what it was like to be 20 and T1. I found that at that age (and now to an extend) that as well meaning as a lot of the advice is, it doesn’t come from experience  so feels as though you are being preached at, thats why the DAFNE courses are so good, because most of the people (ie not the clinic staff) there are in the same position, with varying degrees of experience, from the lifers to the newly diagnosed.

mail in profile if you/he/anyone wants

edit, I’ve used the libre for 2 years now, it’s never been more than 1 mmol off a blood test, usually within 0.3. Ymmv obvs. Though it doesn’t predict where your bloods are going, only where they have been. I tend not to pay much attention to the arrows, as they’ve been off a fair bit

that’s very kind of you to offer Tom, I’ll have a word with him tonight. Best thing might be if you dropped him an email, just to offer advice, he does find it difficult to talk about and just clams up about it, I’m sure speaking so someone in the same position would be different.  I’ll be in touch. Thank you.

I feel like I should add something here. I’ve type 1 since the age of 22, (now 45) and it is a constant thing that you think about. I would say that I was “lucky” enough to be older when it started, I don’t think I’d have done even a halfway decent job of handling it in my teens.

I have the Libre (they’re free here now) and whilst it’s not pin point accurate, that ability to see what’s been going on whilst you were asleep was really helpful. I actually like the trending arrow, I use to help me figure out what to do with my pump depending on what the day is about dish out to me. I don’t know what a CGM machine looks like or how big it is – no-one has ever mentioned one to me in France. They seem to have finally come around to the idea of concentrating on how much time you spend in the good range, rather than obsessing over your average sugar levels. Which makes sense to me as for a while I had a good average level, but I was getting by see-sawing all over the place!

I also have a pump, having resisted them for years as I didn’t want to live with a thing strapped to my waist all the time, tube, papillion etc. Now I have an Mylife omipod, which is a stick on thing like the libre (twice as thick and a little longer), that you change ever three days – and now I’m getting the hang of it (started with it at the end of Nov.) I actually really like it. I can’t say that I minded injecting myself though, so perhaps I was a Little like your son, just don’t make a fuss and get on with it as discreetly as possible.

I still hate it when people make a fuss though. ” Oh, I didn’t think, will you be alright eating that? I can quickly cook up something else…” etc. etc. Which is frankly ungracious of me I know, but there you go.

I now just to make some of you jealous, I have to go and get changed for my weekly ride with the guys – in Provence… (it’s cold -relatively –  and we do need lights… dry trails though!)

Sven

Enjoy @Svensvenson! Agree on the fuss… eapecially food… companies getting people to part big money for sugar free and “diabetic” chocolate really winds my son up… he politely says thank you, if he gets some as a present, and then never eats it… just eats normal food and carb counts. Sugar free boiled sweets and mints are handy though (for all of us).

@fossy, is the Nightrider in use during the day as well?

So apart from the scan bit, they do the same thing

No, you can use it in much the same way… but is not doing the same thing. It is estimating blood glucose levels by testing something other than the blood. A useful indicator, so a useful tool… but it is not accurate (or as you mentioned I think, timely). We spent a day testing with a finger pricker every half hour to gauge how close it was… and it was sometimes out by over 100% (i.e. A reading of 8 when he was 3.5). Most of the time it was about 25% out (say a reading of 10 when he was 13), with no consistency as to which direction it was out. We were testing twice each time in case the finger pricker reading was out as well.

The Dexcom CGM (apart from the first day) was far more accurate (and timely)… we’re talking about less than 5% deviation from the average of two finger pricker tests… consistantly… every time we checked.

Hmm, interesting stuff…possible a daft question – was the blood meter calibrated so that was definitely 100% accurate? I’m not suggesting your findings are wrong – this is all useful stuff…but if the meter wasn’t calibrated then it could be slightly out as well and the difference could be lower (although I’m not going to dispute the 8 – 3.5 variance) – you did have the Libre in for 24 hours before doing the tests as well?

I’m only asking as I’m found that my blood tests and my Libre scans are very similar – I’ve had a variance of 2 mmol as the most on very few occasions (perhaps <4 times)- however, one of my early Libre sensors was way out – similar recordings to your 8 – 3.5 (but mine was reporting 2.6 – for 4 hours, while my blood tests were reporting between 6.5 and 8!) – reported it to Abbot and they replaced the sensor FOC.

So, the upshot of all this is I’ll do even more checking of CGM and see what is what and hopefully get something sorted (to test and then maybe work on getting it for longer) – saying that, my HBA1C result from the blood sample matches the predicted HBA1C from the Libre software – so it does sound as though this is working better for me than other experiences.

(I’m in no way suggesting I’m some sort of expert at this – if you saw the variances of my bloods on a daily basis, you’d understand why I consider this a large part luck with 41 years experience of being lucky with it!)

Kelvin both the libre and Dexcom G5 measure interstitial fluid so both will be slightly delayed compared to actual blood glucose readings. Some people find one more accurate than another but this is down to the algorithms they use. Both worked well for me. The first 24 hours with both could be quite inaccurate for me and a lot of people recommend inserting the sensors 24 hours before activating so they have time to ‘soak’

Libre is flash monitoring which means you have to scan with the reader to get the results (unless you use third party additions)

With the G5 it sends the readings to to your phone or reader automatically as they update the benefits being you can get real time alerts. I have mine set to alert below 4.5 or if my blood glucose is rapidly trending down. Since starting the g5 I haven’t had a serious hypo which is great as I had zero hypo awareness as was previously unable to drive.

You can also share your dexcom reading’s with family via their apps and if you have a smart watch have your levels at a glance of the wrist.
It also works great with nightscout for a live website view and if your feeling really adventurous you can build a closed loop using an open source diy artificial pancreas called OpenAps (https://openaps.org)

Dexcom also looks more expensive on paper than the libre but using a third party app you can easily extend the lifestyle of sensors and transmitters way beyond the recommended (and still keep accuracy) whereas the libre hard stops. So for me dexcom g5 works out cheaper.

We use the nightrider all the time – it’s just the name they give to the re-useable one.

Ok slightly different idea… I’ve had t1 9yrs now and seen bg readings from 1.8 to low 30s… usually early hours post tough rides and massive sessions on the cider plus curry😉…ive always woken up and been able to sort myself out so don’t panic too much!… did the Penmaenmawr fell race and met a woman there with a hypo dog… gorgeous collie trained to let her know if her sugars were dropping… as I said different but maybe worth considering. Also DAFNE was a good help and even the shyest teens came out of their shells in the group environment!…good luck

Cheers @Nalla… we found it very easy to double the life of the Dexcom unit on trial. As I said, apart from the first day, it was absolutely bob on accurate, with no delay, for the whole of the (double the recommended) time we used it, which our Libre doesn’t come close to, ever, useful though it is.

We’ll be ordering the reusable Nightrider @fossy … you pointing out this little gadget is the best bit of information I’ve seen on this forum for months. Thanks again.

We tried to get a hypo dog for my daughter, even cleared it with her school, who were fine with having it there, but she wasn’t deemed bad enough.

We have come up against this in Norfolk, if it is clear you are being a good parent and trying to do the best you can and engage with the Diabetes Team you can whistle for getting a Libre on prescription or similar, go in there with the attitude of not giving a toss and poor control of your child’s T1 and they will prescribe Libre and much more..

met a woman there with a hypo dog… gorgeous collie trained to let her know if her sugars were dropping… as I said different but maybe worth considering

My wife mentioned this the other day, if it detects pre-hypo low blood then it may be worth looking at. But it would be pretty selfish of us to take a trained dog, that could go to someone more deserving, so we can go on holiday.

Hopefully he’ll let me go with him to his next appointment and I can force the issue of getting the Libra.

He did say last night that his blood had been a bit lower than usual the past few nights and has adjusted his long acting insulin. He’s still very sore everywhere, must have been him writhing about then me trying to haul him up, but he’s okay.

@kelvin,

Do take a look at the NightScout group – they have full instructions how to set up a nightscout site so you can record your son’s BG’s. It’s run by parents of T1’s and everything is open source and free. We use the Xdrip+ app to read the blucon, and do the clever bits to the web page. The Xdrip app is better than the app from Ambrosia systems, even if you don’t use the web uploading. The Xdrip app has been written to work with all sorts of CGM’s etc !

It takes about an hour to go through the instructions, just needs you to write down the passwords and usernames etc and follow it by the letter.   If you have the web site open in the background, it will also alarm if your son is high/low – even when you are on the opposite side of the world !

I’ve been T1 for 5 years (I’m 37 now) which was brought on by auto-immune pancreatitis. My ratios can vary by up to x4 depending on the dose of other meds I’m on at the time. Fortunately I have never had a hypo where I have required external assistance but I’m no stranger to shaking like a pooping dog at 3am whilst I wait for the toaster to pop.  It’s always fascinating (in a very depressing way) to see how care varies around the country. I was fortunate to be assigned an amazing person who would call me out of hours whenever I needed her, and at times I really did.

@Gary_M

I’m glad to hear your sons ok. I know younguns are not the best with scare tactics but if he has to declare he’s required external help and he declares it on his license renewal he may not be able to drive.

Also, are his highs an issue at all?  If he doesn’t have them now I would highly recommend getting keto sticks. If he’s ever ill he could have ketones even when his BG is fine. I know a lot of people are not given these.  Breath smelling like pear drops is always a good indicator too.

I can sympathise with him wanting to get a handle on this himself. It’s something for life and you want to know you have control of it. Hopefully these scares will arm him well for a a well controlled future.

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I’m glad to hear your sons ok. I know younguns are not the best with scare tactics but if he has to declare he’s required external help and he declares it on his license renewal he may not be able to drive.

Even if it’s a one off in his sleep?

Also, are his highs an issue at all? If he doesn’t have them now I would highly recommend getting keto sticks. If he’s ever ill he could have ketones even when his BG is fine. I know a lot of people are not given these. Breath smelling like pear drops is always a good indicator too.

No issues with highs, I’ll look into the ketosticks though. He still remembers what it felt like before he was diagnosed so would know if it was an issue I think.

The regional variation can be maddening … we had ketone sticks taken off us … I can’t remember why our clinic now frowns on them … and moved on to a ketone blood reader … you use it with a finger pricker. A bid odd that some regions don’t seem to offer any kit or advice as regards high ketones… considering this is where the real damage occurs.

@gary_m

I don’t have a copy of the form to hand but I don’t think it questions that difference. I think if you’ve had 3 in a certain period then it can set alarms off with the DVLA. I was going to suggest this may encourage your son to be more open with his monitoring but knowing younger me, it would probably make me more secretive of the problems.  It’s a tricky one. I hope that everyone on here who manages to partake in such an active pastime can help him feel more normal. I know it took me a while to accept. It still gets me down from time to time, knowing that I’m constantly having to analyze everything about my day.

@kelvin

You are amazingly lucky on that front. The ketone blood testers are amazingly more expensive but are much better. The wee sticks are always an hour or more inaccurate. I fought for a long time for a blood one but can only get the strips if I am admitted to hospital.

Yeah, the strips are VERY expensive, hence the year long battle with the GP to get them on the prescription, despite the clinic insisting. We very rarely use them though (once a month max) so we’re not completely bringing the local NHS to a halt.

The whole point of them is to keep you out of hospital though, no? They’re a preventive tool… so an odd rule to only let you have them once things have gone so wrong. Depressing in fact.

.

Keytone sticks are expensive, but we don’t have an issue getting them.  Since getting the libre, we’ve saved the NHS a fortune on BG sticks and pricker needles.  Even more with the blucon.