Our 20 year old son was diagnosed with T1 diabetes 3 years ago and since then he’s not had a proper full on hypo until the early hours of Wednesday morning.

We heard a groaning noise about 2am and found him in moving about in bed, eyes staring and foaming at the mouth. We couldn’t get him to come round at all but managed to sit him up and get some lucozade in him, then check his blood which was 2.4. He then came round a bit. My wife had dialed 999 and they sent a paramedic. He came and got him sorted out.

Now the point of this is that we often go away for weekends and weeks holidays and he’s left on his own. We now feel there is no way we could possibly risk doing this, what would have happened if we’d been away and he’d been on his own, would he have gone into a coma?

The paramedic said we did exactly the right thing calling 999 and it was lucky we were woken up by the noise. So I’m thinking that had he been alone the consequences could have been tragic.

His blood is well managed so it’s not as if he’s not in control, just a blip I guess.

Any advice please?

I’m not going to ask my parents for their response…but I suspect it was a world of worry…however, they got through it all and I’m still here (which probably could be passed off as ‘luck’ as well as ‘management’).

As much as hypos are not a pleasant experience – in most cases – you are likely to come out of it – but it isn’t pleasant and you are left feeling properly rough – this isn’t a guarantee though, so don’t be taking this as gospel and the actual word. Providing the individual has been eating properly and their reserves are well stocked and they haven’t been having frequent hypos, then they are likely to recover.

Please DO NOT take that as medical fact and bet your life savings on it – in some cases, that isn’t the case – however, from experience and conversations with the diabetes specialists at the hospital, this has been observed/experienced.

For the next week, make sure he is eating well and his bloods remain ‘normal’…

Had he been doing anything out of the ordinary last night? Any extra exercise or activity? It might have been that that knocked him out of sync and aided the hypo…

Hope it is a one off and your son quickly recovers from it. If you do go away, let his girlfriend stay – he probably won’t sleep much anyway, so any hypo will be quickly spotted! 😉

We’re still doing a test at about 1am every night. When he’s in the house alone, get him to set a 1am alarm and test… bloody unlikely that he’ll slip from a good reading at bed time to such a low one by then, or between a good reading then to such a low one come 6 or 7am.

Look into a CGM for use when you’re going away, if you’re really worried… they take you from stabbing around in the dark (literally) to seeing the course blood sugars are taking, and being able to prevent, rather than correct. You can also set them to alarm if things are going South, fast. Not cheap though. Few areas in England&Wales supply them on the NHS. Recent ones will even share the blood sugar graph direct to your own phone, wherever you are in the world, while he sleeps.

I’m using the Freestyle Libre – £50 per sensor (lasts 14 days) but also available on prescription (but they aren’t available to everyone (yet). This is a Flash Glucose Monitoring system – stores a result every minute for 8 hours, you scan the sensor in that time and all results are saved, you can then see the pattern for the last 8 hours of your results. I think this is a CGM, but you do need to remember to scan it (however, I’m doing about 15+ scans throughout the day which is a huge amount more than I was when doing finger prick tests.

Has been very good so far, my day time bloods a more stable (still not great, but getting there) and my night time stuff is proving interesting and allowing me to tweak my pump settings to try to flatten things out.

Libre useful for looking after yourself… not as good for paranoid* parents… we use one when going on active holidays, or the boy is away with school… but they are absolutely nothing like a proper CGM… the one we trialled was a life changer… but too expensive to self fund (your circumstance might be different).

[ * all ]
[ Libre not on NHS in this area, but still cheaper than a proper CGM ]

One good thing is that smart phones reduce the initial cost of using a proper CGM, or the Libre, these days, as they can be used instead of getting a handset/scanner. You “just” need to buy sensors. It means you can try them without too much expenditure, and then chose to use them just for key periods, rather than year round.

My girlfriend is T1

First time I woke up and discovered her in a hypo, I thought she was dead. Had no idea what to do so phoned 999.

Now I do know what to do, and Im very good at spotting the signs. Cold but sweaty, low/non responsive etc. Hypo gels are on hand if it happens again.

My mrs says she will snap out of it eventually and come round enough to get herself sorted, but it’s still a horrible thought that she’d have one when I’m not there. She’s had T1 since she was 11 so almost 30 years now. A really shitty disease that she never, ever gets a day off from.

Oh, Freestyle will give you a free sensor, so you can try out the Libre for free. No reason not to. CGM trials are normal as well, through your Hospital. Manufacturers are happy/keen for you to try their solutions out.

Thanks for the feedback so far.

Please DO NOT take that as medical fact and bet your life savings on it

Don’t worry I won’t.  It won’t change how we feel at the moment.

I think the Freestyle Libre is now available on the nhs in Scotland and he has a 6 monthly check up next month so he can ask about that.

We’d been to watch football that night and it was a pretty exciting game so that could have caused his blood to drop. He did have something to eat when he came in though.

He’s usually very sensitive to how his bloods are and has always woken if if his blood has been slightly low so this was a big shock.

No girlfriend unfortunately,, diabetes has given his confidence a big knock so he struggles with stuff like that.

I’ll speak to him about testing his blood during the night but there’s no way we can risk leaving him on his own overnight now. It’s just not worth the risk.

If you’re in Scotland there is GOOD news for you.

= :87)

Be pushy and emphasise the overnight low. If necessary, lie and say it wasn’t a one off.

Aim high, ask for the Dexcom G5… only accept Libre as a fallback…

In some areas in Scotland the Libre is now pretty standard… all have some funding for it, but needs based… some people get the G5, but you’ll need sharp elbows. It’s possible though (unlike most of England&Wales).

The thing is he doesn’t want us going with him when he goes for his check up, understandable at 20 I guess. But he isn’t pushy and doesn’t ask for stuff. I think I’ll see if I can go in with him next time as I need to get some questions answered.

As I’ve said it is generally very well managed, this has just been a very big shock to us and no matter what we get for him I can’t see how we can leave him to possible to through that on his own, no matter what we do to mitigate that happening.

If there’s the slightest chance he wouldn’t be able to wake up and sort himself out then it’s just too much of a risk to take.

And any recommendations for hypo gels?

Pushy… or you’ll only get the Libre (eventually).

Get reading… http://www.ipag.co.uk

My son is 17 and has had T1 nearly 4 years. Been using the libre and a Ambrosia Systems blucon which sits on the libre and turns it into a CGM and sends readings to his and my phones. It means it alarms if he goes too high or low.

My son hasn’ had a hypo that bad though. We’e had times where he isn’ very responsive but that’ normal in the night.

He is at the age where he doesn’ want to come to our caravan at weekends, but he is terrible at keeping in touch despite having his phone welded to his hand. He can keep in touch with friends but not us.

The libre may be being NHS funded but it’s a lottery. We bought the blucon in November from the US and was about £150 with import duties.  It just sits on the libre a d reads it every 5 mins. We use Xdrip app that monitors his bloods and that also uploads data to Nightwatch web page which we can access from anywhere.

At least with the blucon it will alarm before he goes too low.

Push for a libre. We are waiting for it to come on the NHS in our area but we are currently paying for it

Gels should be part of his prescription… GLUCOGEL most likely. Get the clinic to add what he needs on a letter to his GP. Don’t bother asking the GP… and he won’t get what he doesn’t ask/push for… that’s just how it is. Took us a year of hassle to get strips for a keytone reader through the clinic>letter>gp>prescription system… nothing will happen without chasing and hassle. Our GP is always taking essentials of our son’s prescription… chasing/pushing to keep things on the prescription has become normal/regular now… and that’s just to get the kit the clinic deems essential, nothing to do with things we’d rather be using.

Ambrosia Systems blucon

That looks great! Will investigate that a bit more… the Nightrider is reusable as well… they deserve some brownie points for that.

He is at the age where he doesn’ want to come to our caravan at weekends, but he is terrible at keeping in touch despite having his phone welded to his hand. He can keep in touch with friends but not us.

Sounds just like our son, and we have a caravan too.

To be honest I’ve not been impressed with his levels of care, it’s just been a bit ‘you’ve got diabetes, see you in 6 months’, we need to get that sorted. He’s never been told about hypo gels or a keytone reader. The problem is he doesn’t want us to interfere, it’s his thing and he wants to deal with it.

Fossy that kit you’re using sounds impressive, we’re happy to pay if it will give us some level of comfort.

You should have gels EVERYWHERE. Tablets are fine for control, but once things have got as bad as you experienced with him, gel should be going in. You also need a Glucagen kit in the fridge. Don’t worry about how to use it, if you ever have to you can be told over the phone. Hopefully you’ll never open one.

Still not sure Keytone testing is essential, but our clinic insists it is, so we have the kit (rarely used).

As Eluded to above, it’s unlikely you’ll come to harm from a hypo in your sleep, the issue is what might happen to you if you have one while you are awake, falling/driving etc so, aside from feeling a bit rough the next morning, it’s not something I (25 years T1) ever really worry about, certainly not something to not leave him alone overnight (chances are he’s had a few, but never even known about them), but I understand why parents may fret.

As Eluded to above, it’s unlikely you’ll come to harm from a hypo in your sleep, the issue is what might happen to you if you have one while you are awake, falling/driving etc so, aside from feeling a bit rough the next morning, it’s not something I (25 years T1) ever really worry about, certainly not something to not leave him alone overnight (chances are he’s had a few, but never even known about them), but I understand why parents may fret.

Really, so even from the state he was in – eyes rolling, frothing at the mouth and totally out of it, he would just have come round? I know you’re not going to say ‘leave him, he’ll be fine’ but that would give us some level of comfort. Not that we’re in any state to leave him any time soon but would be good to know we could still leave him for a night at least.

Yes, Libre is good but isn’t a CGM – it doesn’t hook up to the insulin pump. Probably depends on the pump, but I’m unsure if you can program the pump to behave like it is in a CGM solution – it would mean probably plugging results in every half hour or so – and more if your blood level is getting to the point where the pump might switch off to aid getting your blood level back up.

I’m on a Medtronic pump and the CGM for that is about £250 a month (when I checked about 18 months ago – just before I started self-funding the Libre sensors) – it looks a great system, but it is too expensive for me to self-fund. The Libre sensors have been a great help – as has the pump, but I’m personally, not feeling the need for a CGM solution yet – especially at that cost.

I was offered a trial of the CGM, but I figured as it only lasted 1 week that it probably woulnd’t be long enough to see if there were any significant improvements. Would be good if the technology became cheaper and more widespread I think.

There are people in the US making their own CGMs but I’ve no idea how those would work and don’t fancy trying it myself as my abilities at DIY tend to end up in failures for the first 4 or 5 attempts!

he would just have come round?

No, he needed the glucose. Some people will wake and self treat… their anicdotal experience isn’t universal.

But [ parnoid parent time ] be realistic about the risk. Night time lows are rare, and rarely get as bad as your son experienced. As I said, lie and say it has happened twice to try and get kit (in Scotland) but it really isn’t the case that a second experience like this is just around the corner.

Don’t let this limit your life (or his).

—————

Dick… take the CGM trial… it’s really interesting/enlightening. The greater the number of people who know what a week with one is like, the more pressure will mount as regards NICE and funding. At the very least, we need the moves made in Scotland to happen down here as well. That’s part of the point of the trials… manufactures and medical professional can’t change anything in the NHS without a swell of support from the people who would benefit from the change.

Night time lows are rare, and rarely get as bad as your son experienced.

I know, but it only takes one I guess.

If we lie about hypos will this affect his driving, ie will clinic inform dvla?

I think at the moment, until we get over it, we need to let it limit what we do. I can only imagine the level of guilt we would feel if the worst happened. however remote, if we were away having fun. But it’s too soon for us to even think about that anyway.

Has he sent form DIAB1 to the DVLA?

I don’t know what they do with it… our boy is still a nipper.

This all sounds like you need to insist on some advice and training… your lad can’t freeze you out of his contacts with the NHS and expect you to limit your lives as a result. There is NO need for you to not be able to go away… and your paranoia can only be mitigated away with actual knowledge and action… this is what the NHS is for. If you are so involved in care and treatment, your son needs to let you have NHS contact… and that should be entirely possible without him losing his privacy.

Has he sent form DIAB1 to the DVLA?

Yes, he did that as soon as he passed his test.

Sounds like he’s more on top of things than your earlier posts suggest then.

= :87)

I’ll chat with the diabetes unit at my next visit (few months away yet)…I suspect it will need longer than a week to ‘trial’ it as for the first 4 or 5 days surely you’ll be second guessing what the pump is going to be doing. I’ll maybe see if I can wangle a fortnight, but might also depend on my blood levels, they have improved since the pump and then the Libre, so the convincing may be more than just a chat!

Sounds like he’s more on top of things than your earlier posts suggest then.

Only because we told him to do it. Saying he’s not on top of it is unfair on him, he’s just not very vocal so wouldn’t go to an appointment and ask for things. As I’m sure you know it’s not easy for a person of that age to deal with.

second guessing what the pump is going to be doing

Our trial wasn’t closed loop like that (in fact, I don’t think any UK ones are).

Ours was a Dexcom unit, which I hacked to double the life of… it didn’t talk to the pump in any way whatsoever.

You’re right, a week isn’t long enough… we held onto ours as long as we could keep it working.

Gary, I think he started with all this at the worst time possible… glad you are understandable about that. You need to talk to professionals, and attend training sessions, for your own reassurance really. If things had kicked in a few years earlier, NHS staff would have insisted on it… you’ve fallen through the crack a little bit it seems.

Don’t let your life be limited. Get away when you want. Get the reassurance you need, and the kit you need. You shouldn’t be a prisoner of this… no one needs to be.

Thanks kelvin.  Just all a bit raw at the moment.  And yeh I need to speak to someone.

Thanks for everyone’s support

My 8 year old daughter is T1 and was diagnosed at 4, you have to remember too that insulin is a hormone, so at 20 his hormones are probably still playing havoc a little, meaning that insulin requirements may constantly change.

Is he still injecting or on a pump? If he is not, i’d definitely try to get him on an insulin pump too, gives him far great control and he can set different basal rates for different times of the day and night which can help address problems.

We do not get Freestyle Libre here on Norfolk currently as they won’t provide on prescribe, the usual crap postcode lottery, but we self-fund it and it does make tracking “trends” easier to as you’e not just getting a snap-shot of what his blood glucose is doing at a given finger prick time, you are getting the last 8 hours, so you can see at what points his BG may be dipping in the night?

Don’t be scared to contact his Diabetes Team at hospital and if you think you or he is not getting answers, you are in your right to ask to change teams.

Lastly i can really sympathise with not being able to get away, whilst it is really hard for the T1 sufferer, it is hard for parents, it is easy to really beat yourself up if his “scores” are not good, my daughter was admitted recently for her bloods being ridiculously high, it hit home when they insisted we stay on phone as we drove her in and told me to make sure she stayed awake even if that meant shaking her and as we got to A&E we were told a Resus Team was on stand-by!! Purely because her pump had failed and she’d had just enough residual insulin on board to give a good reading when i’d checked her at 5am, by 7.40am she was vomiting and almost dropping unconscious. Scared the shite out of me.  But as parents you need a break too, we struggle now as my mother-in-law was trained to look after her, but she now has leukaemia, so my wife and i were reminiscing last night about our last weekend away with my daughter, and realised it was 4 years ago!

Your local diabetes unit should have people you can talk to, I’m lucky as my local unit is very good (from my experience).

If the cgm doesn’t talk to the pump, what does it do that the Libre doesn’t? Genuine question as I don’t know…the Libre records a blood every minute, but needs scanned at least once every 8 hours…so it is doing continuous sensing.

@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.

If the cgm doesn’t talk to the pump, what does it do that the Libre doesn’t?

1 – measure your blood glucose
2 – transmit at repeated regular intervals

But @fossy has pointed to some cunning kit that performs point 2 with a Libre. I’m ordering the nighttime transmitter as soon as I’m next paid…

My 8 year old has been Type 1 since being a baby.

We can get the Libra on the NHS here, but she refuses to wear it and won’t even consider a pump! She is very opinionated.

We’ve been getting HbA1C scores of between 7.2 and 7.4 since diagnosis and she doesn’t suffer night time hypos, so at the moment we are happy with the needles. We do get the occasional run of highs, typically around Christmas and Birthday, which can last for a week due to her excitement levels. The growth spurt related ones normally only last a couple of days.

When she gets bigger she may want to consider a pump to allow her some more control and ultimately independence, especially if it can closed-loop feedback.

In the meantime we have 2 sets of trained grandparents, but the reality is that we go everywhere with her. To the extent that I am now one of her Cub Pack leaders so she can go camping.

Ho, hum. You just have to get on with it though don’t you? Nothing more to add to this thread, but it is good to see stuff from the parent’s perspective every now and again.

Is he still injecting or on a pump? If he is not, i’d definitely try to get him on an insulin pump too, gives him far great control and he can set different basal rates for different times of the day and night which can help address problems.

No he’s injecting and as far as we know never been offered a pump.  He wouldn’t let us in with him to his last two check ups. It’s likely if he was offered one he would just say ‘ don’t need one, I’m fine injecting’ – he just wants to be normal I suppose and doesn’t understand a pump may be better.

And yeh it is hard, we’ve been coasting along just fine after the initial shock and learning we needed to do after his diagnosis.  This has really hit home home serious this condition is, not that we didn’t know, but it’s been a massive wake up call.

Anyone with a 20 year daughter in the west of scotland that wants a tall handsome young man for a boyfriend please let me know. Parents will need to be happy with them having sleepovers 🙂

Just out of interest… How often do you check Ketones and what do you do about it? We’ve got the kit but tend not to use it.

No he’s injecting and as far as we know never been offered a pump.

Studies in USA show that CGM paired with injections actually offers better control than a pump with finger pricking. Which is one of the things causing changes in the NHS (in Scotland and rare bits of England). Of course, CGM plus pump best of all… but cost benefit wise, backing pumps but not CGM seems to have not been the no brainer decision that NICE thought it was.

So apart from the scan bit, they do the same thing…Libre has a ‘parent’ app that gets the results added to it so others can keep track of results as well…can’t recall the name – LibreLink, maybe.

Libre does really on being scanned though…so it isn’t entirely the same thing.