No-Film Night – by Olly Double


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For me, night time blood glucose testing is one of the worst things about having kids with diabetes. Jacqui and I have always tested before we go to bed, ever since Tom was diagnosed back in 2000. Carrying out a minor medical procedure is hardly the most relaxing way of getting in the mood to sleep. In the last couple of years, we’ve also started getting up and testing their blood glucose in the middle of the night on a regular basis.

There are two reasons to do this. First, we’re trying to get their blood sugar control as tight as we can. The night is a long time, and if they’re hyperglycaemic overnight for days on end, they’re certainly going to find their HbA1C has gone up at their next clinic appointment. Second, anybody who lives with diabetes lives with the knowledge that – although it happens only in extremely rare cases – a prolonged overnight hypo can be fatal. I know I’m not the only parent who starts their day by making sure their diabetic child is still in the land of the living, even if I know in my rational mind that it’s statistically highly unlikely that anything like that would have happened to them.

We test their blood sugars pretty much every night at least once. On a good night, both of them have blood sugars in the normal range, so it’s just the ten minutes or so that it takes to do this, then back to sleep. On a bad night, Joe’s having a hypo and Tom’s blood sugars are raging high (or vice versa), so we have to give one of them Lucozade and the other extra insulin, and then we have to retest one of them 15 minutes later, the other an hour later. We take it in turns to do the night-time wake ups, but a particularly bad night can see both of us getting up several times.

Of course, testing blood sugars at night carries a cost. I find I’m permanently tired, particularly since Joe and Tom moved up to secondary school, which means getting up at the ungodly hour of 6.30am. Add to that the one night a week when I don’t get back from work until around midnight because I have to compère my students’ stand-up comedy show, and you’ll understand why I’m in a constant state of total knackeration. I find that I not only feel constantly tired, I also think it. On a regular basis throughout the day, I find the words forming in my head: ‘God, I’m tired.’ If there was a World Bank for sleep debt, it’d be downgrading my credit rating as I sit typing this.

Then there’s the lack of a social life. For years, Jacqui and I would never go out together because we couldn’t find a babysitter who could take care of their diabetes. Now there’s another reason – we’re just too shattered to think about going out. We spend a lot of our evenings just staring at the telly, which is particularly grim because so much that’s on telly at the moment is so lame-brainedly dull. We can’t even stick a film in the DVD player, because the chances are I’ll have fallen asleep by the end.

Take last night, for example. It was five past nine, and both of us were craving the escapism of a film night. We had two lined up, District 9 and Juno. Juno had the advantage of being shorter, at 92 minutes, but we’d already seen it, and wanted to save watching it again with Joe, who at 13 is about the right age to start getting what it’s about. Checking the running time of District 9, I managed to persuade Jacqui that we could manage it: ‘It’s only 16 minutes longer, and we’ll still be able to be in bed before 11.’

She agreed, but before we put it on, we needed to check Joe’s blood sugar. It turned out he was having a hypo – so that meant treating him for it with a portion of Lucozade, then retesting 15 minutes later. Of course by that time, it was too late to start watching even the brilliant-but-short Juno, so we had another no-film night, and ended up watching The Apprentice, which involved the usual parade of obnoxious halfwits proving that they have far more ambition than sense and being ritually humiliated by a man with a face reminiscent of a half-melted waxwork of Sid James.

Having said that, I’ve got no room to talk. After all the broken sleep I’ve had recently, my face looks so haggard and knackered that I could be mistaken for a half-melted waxwork of Sid James.

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I have been reading the above posts with interest. As a type 1 diagnosed back in 1964 at the tender age of 14,it all was a bit of a mystery and as i recall I wasn’t too concerned about it other than the fact that I was going to have to learn to inject twice a day and measure blood glucose levels by tablet testing urine which was only capable of measuring/(Gu)estimating blood glucose levels retrospectively. So no instant home blood glucose monitoring,no insulin pumps and a relatively restricted range of insulins in different strengths which I also had to learn to deal with. Carbohydrate content of foods was learnt (exchanges) , and a pair of free NHS scales issued to weigh food portions. Without the benefit of home blood glucose monitoring,managing my diabetes as an adolescent, wanting to socialise/excercise and yes rebel, was a bit of a nightmare. I remember how upset my mother felt that she had somehow “caused” her child to have diabetes and later she told me that she had cried time and time again as she wondered how she and I could possibly cope. We went through all the emotions being described above and over the years have talked to many good and experienced nurses and doctors but i have also met and talked to many who hadn’t a clue about actually living with diabetes and gave some very poor or indeed no advice when needed.
I have had many night time hypos and the advice that I received in the early days was that the bodies natural response will “in most cases” give adequate protection although it was something to be avoided if possible. Bear in mind that there was no ability to achieve the tight levels of blood glucose being sought today by some, others are not so keen on such tight control.presumably on the basis that if you die overnight or drive your car into someone killing yourself and perhaps others in the quest to achieve tight control ,then worrying about long term complications,which may or may not occur ( genes apparently also have something to do with the devlopment of some complications) becomes pointless !!!
I think that the tight control achievable with pumps may well have a downside in that it perhaps(?) suppresses the bodies natural ability to deal with a night time hypo or alternatively glucose reserves in the liver are so depleted by repeat hypos that they no longer are effective ???
I am now 60 years of age,yes I have some slight peripheral nerve damage consistent with diabetes for 40 plus years,eyes and kidneys good, heart/blood pressure excellent.
Parental concern is normal,but other commentators are right when they say its your diabetes,you have to learn to live with it and control it(at the right age for you) to the best of your ability.
Finally may I ask, in order to get perspective on the problem has Diabetes Uk got any figures for deaths by hypo over recent years,perhaps related to the number of diagnosed diabetics?

i have type2 diabetes, and just recently gone off eat food, now ten weeks, losing 3st.
any one else expierienced this trouble .

You appear to be controlling your children’s diabetes rather than allowing them to live and learn, a BM test is not a medical procedure, it is an everyday thing to a diabetic in the same way injections are, your boys are 12 and 14 and as such should be in charge of their own management and treatment, unless they are both impaired in some way that you haven’t mentioned? I can understand you think you’re doing the right thing but your blog and the video both give the impression that the diabetes is your problem more than theirs and it is you who controls it for them, my only question is what happens when they go away for a night or you’re not there for any reason? Diabetes is a personal thing, no-one can live it for you and worrying about it only makes control difficult, let the boys be ordinary boys or watch them grow up with paranoia about something that isn’t a problem at all if you’re sensible.

Hi Clair,

Thanks for the post. We certainly understand your worry. The artificial pancreas is still in the testing phase, but has been taken home by research participants so they can try it out in real life situations.

Have you spoken to your doctor about getting a pump for your daughter? It is worth enquiring to see what’s possible. You can search for “pumps” on our website where you’ll find some helpful information.

Thanks again for your post – hope you found it helpful to write. If you want some more advice from others who are in the same situation, or have been through the same things, you may want to check out the Diabetes Support forum. They’re a really helpful group and we’re sure they’ll be able to offer some good advice if you need it.

All the best,

Diabetes UK

Reading all of these posts has made me feel even more paranoid than I already am. God I’m not sure if I will be able to sleep tonight.
My daughter has had type 1 diabeties since the age of 3, she is now 12. She has had good hba1c results, 7ish until about a year ago when she was put onto the basel bolus regime. Now her hba1c is up to 9. She seems to have lost the ability to wake herself up when she gets low at night and has had a couple of fits. It was just by chance that we found her in that way as she had her sister sleeping with her on those nights. It doesn’t bare thinking about what could have happened if she had been on her own. She is in her own room alone at night most of the time so we have a baby monitor in her room so hopefully we will hear her if she starts to fit again. I check her BG late at night, about 11.00. If she is below 7 I wake her and give her a slurp of lucozade and a few bites of a biscuit. I would like it if there was a monitor that would check her blood constantly and alarm if she got too low through the night. She is often out with her friends and having sleepovers which is a huge worry.
I would be very interested in the new artificial pancreas, but how many years is this from being available. I have also read about a new pump called a Paradigm Veo, which has constant BG monitoring on it but she probably would’t ft the NHS guidelines to be able to have a pump. I guess its all about money and not the long term health of my daughter.
I hate all the blood testing and injections, her finger ends are all dotted and a mess from all the years of testing and she always has bruises from her injections, she has also developed Hypothyroidism which is another health issue she could do without. She often gets upset about everthing asking “Why me”, which is horrible and there isn’t much I can say to make her feel better. I just wish to God they would hurry up and find a cure.
This is the first time I have ever written anything about her condition so am just having a bit of a rant. Sorry.

Hi Rho

Thanks for visiting the blog and commenting on Olly’s post – hope you and your son are getting on ok. Testing a child can be difficult at the best of times, so doing it at night can be much harder. It is very important to test regularly though as this will help gain a better picture of control. Our Careline can offer some help and advice on this is you wanted to speak to them – you can call on 0845 120 2960. You might also want to check out our Facebook group where there are many other parents who will be experiencing the same things as you who will be happy to share their advice and own experiences.

All the best,

Diabetes UK

I don’t test at night. I check visually but don’t test. It’s not because I’m ignorant or want a good night’s sleep. It’s because my son screams and screams and screams when I prick his finger. It can take an hour to test and resettle him. He is 9 and type 1 for 1 year. I test perhaps once a month after an especially busy day or low reading at bed time. I would test every night if it didn’t distress him so much. I would welcome advice from more experienced parents.

To Helen – congratulations on completing the Duke of Edinburgh award. Brilliant. I know its tough.
I can well imagine how hard this is, as I was with staying with friend over a couple of days during the time her daughter ,who has type 1 diabetes, was camping out in the wind and rain. I can’t say that the mum and the teachers were at easy during this time, especially when they had no mobile phone contact and there were hypos to deal with. However these were dealt with.
It’s very difficult when you know what you know about night time hypo unawareness and not mention it. I find it very difficult to talk about it is scary. We had been wrongly told that if my daughter went low at night that her BG levels would rise. This did not happen and because we weren’t testing at night regularly, my daughter experienced several severe hypos which caused seizures. Never seen a rebound high from a low yet. This was not post exercise low BG levels. Also CGMS show that many people experience very low levels overnight without being aware of this. One has to decide whether people ought to have this knowledge and be able to do something about it. Or whether not to mention it because it might upset someone. Which is better – for people to have the knowledge, or remain unaware that there are risks. If people know there are risks they can choose to do something about the risks. If they do not know they do not have the choice.

Having said that, most parents ask themselves whether they would let their child take part in some thing if they did not have type 1 diabetes. If the answer is yes, then most parents do whatever they can to enable their child with diabetes to take part. Parents want their children to have as normal as life as possible and still remain safe.
As I said before, in an earlier post, most parents don’t want perfect levels they just want to maintain “good enough” levels and for their child to have a happy healthy fulfilling life.
It is good to hear from young people who are having fun and managing well with their diabetes. Thanks for telling us about your experience.

Hi
I really really do understand your point- its something that we must know about, we cant just live in the ignorance about complications because its just not good at all really. You didn’t upset me, I know what can happen and that’s why I take every measure I can to avoid it- I just sometimes think that we focus too much on the bad stuff
But I do really really understand your point and I do think you are making a good one, but I am also glad you appreciate mine
Thanks (:

Hi to Helen
Your post is excellent, well done on your Duke of Edinburgh award, I tried that as a teenager and was not great at it, didn’t like being told what to do I’m afraid.

I take your point in your penultimate paragraph and whilst I appreciate what you say unfortunately some of us had no choice but to refer to the not so great side of diabetes due to the ignorance of one other’s post. Unfortunately this is the down side or rather major down side as there is no upside, and it cannot be ignored. I wished I had been told some of these things at my daughter’s diagnosis as it makes it all a little clearer as to what diabetes type 1 is really all about and its these things that are the reason we all test so much. So whilst I am sincerely sorry if I, for one, have upset you, the reason to print these things was stronger than to ignore it.

Take care :-)

I’m in the same situation as you Ollie, films are a rarety. Me and my husband tend to watch TV series via iTunes or DVD’s or iPlayer. We store up the decent programs for a couple of

I have type one diabetes, as a young person, I would like to make my own point upon this matter.
For example, last year I did Duke Of Edinburgh expedition, which involves camping for two nights, walking for two days. Its hard, you come back tired. You walk up a massive hill to sit in the rain eating soggy sandwiges a million miles away from civilisation. But the thing is, when I signed up for it this time last year, my parents thought more about buying me waterproofs than worrying about my diabetes. I knew exactly what I had to do- food supplies were low GI, I had pots of porridge for my breakfast, emergency sweets which got consumed at the end by a group of sugar deprived lads waiting for their lift home. I took pasta for my evening meals, and really, my diet helped beyond belief for energy. I tested before I went to bed, and after having sugars on the low side, I boosted them, tested again, then re-tested in the early hours. I can assure you that by doing this, my mind, my friends minds and my parents minds where perfectly at ease.
Control should not be loosened and complacency should not be had. Yes, of course we need to get on with our lives, but really, we are not going to be able to if we live in ignorance. I’m sure that without testing, I wouldnt be as at ease with doing things like that, things which non diabetics find difficult!

However, I do really need to stress this point. This blogging site is meant to be read by everyone- newly diagnosed diabetics included. Talking about death is maybe a little bit scary and morbid? It certainly put me in an uneasy mood…and I am certainly not naive about the matter.
Also, talking about the many complications we will get…yes, its very true and apparent, but maybe think about the steps we are taking to not get them? Its a constant battle for diabetics AND parents, and its control that gives freedom.
But please, maybe when you are voicing all the terrible things that could happen, imagine if your own children were reading it.

This family do not check their children’s blood glucose levels at night to try and achieve perfect blood glucose levels. They are not looking for perfection, only good enough control. They check the levels at night out of necessity. You wrote “everyone needs to learn to be a bit independent” and I am sure, that in the case of this family, they are perfectly capable recognizing when their children are ready to take over responsibility for more, or all of their diabetes care. Has it occurred to you that this family’s medical team are perfectly aware that the family are carrying out night testing and agree with the need to perform these tests?
No one can guarantee that because the blood glucose levels are “good” during the day, that they will remain so during the night. I am certain that if they listened to the doctor, he would say carry on doing exactly what you are doing. Diabetes does not go away during sleep, checking at night makes sense, especially for young children whose brains are still developing.
I would be interested to know what peer reviewed medical studies you can point me to, which indicated that if the blood glucose levels are stable through the day, that the night time levels will also be stable. It is totally impossible to predict that there would be no adverse events during the night just because one “has had some supper”!! The body is extremely complex and injection regimens are a very crude method of mimicking what a functioning pancreas does. Not only is the production of insulin affected by type 1 diabetes, but the production of other hormones like glucagon and amylin are also affected. Insulin pumps can better replicate the delivery of insulin, but even this is a crude method.
My daughter’s levels may be totally different at night than during the day and she, like many children, has no hypo awareness at night and doesn’t wake if she goes low. She has had seizures in the past due to severe hypos because she doesn’t wake and recognised the lows. We use an insulin pump and the basal levels on the pump are set fairly low to try to prevent hypos at night. However, the levels at night can be fairly unpredictable at times. Two nights ago her BG levels were 2.2 mmols at 2.30am and the following night she was low again at a similar time. Each time I treated her with a small amount of fast acting carb and put a temp zero basal on the pump. Last night her BG levels rose unexpectedly to 16 mmol/l and she needed a correction to lower the levels. Had we not carried out the night testing she would almost certainly have continued to go lower when she was 2.2 mmol/ls and when she was 16 mmol/ls in the middle of the night, she would have had very high BG levels by morning and feel very unwell if we had not corrected the high. During the days before the unexpected blood glucose excursions, her BG levels were within the normal range and there was no indication that anything in the insulin regimen which needed to be changed. Having seen my daughter having terrifying seizures and knowing that night time hypoglycaemia extremely serious, I am still going to get up and check. My daughter doesn’t wake up when tested at night. I might also point out to you, that insulin, according to an October 2006 study published in Journal of the American Medical Association (JAMA); an estimated 56,000 “adverse effects” requiring patient emergency treatment (most due to hypoglycaemia) are reported each year, making insulin the medicine with the highest level of adverse effects. No other medicine even matches it!
There is a lot of difference between controlling diabetes so that you can live your life to the full, than letting diabetes control you.
In studies; a fall in plasma glucose to 2.2 mmol/l provokes an awakening response in most healthy control participants, but this response is impaired in patients with type 1 diabetes. … Failure to awaken, increases the risk for type 1 patients to suffer prolonged and potentially fatal hypoglycemia.
Defective Awakening Response to Nocturnal Hypoglycemia in Patients with Type 1 Diabetes Mellitus
http://www.plosmedicine.org/article/info:doi/10.1371/journal.pmed.0040069
Prolonged Nocturnal Hypoglycemia Is Common During 12 Months Of Continuous Glucose Monitoring In Children And Adults With Type 1 Diabetes
http://care.diabetesjournals.org/content/early/2010/02/25/dc09-2081.abstract
You also wrote
“Believe me i have seen many a diabetic so caught up with timing of meals/injections etc that life becomes dominated by the condition.”
I have also seen many people with diabetes suffer the consequences of not having been able to achieve adequate control. Often through no fault of their own.
The only information available to us to manage diabetes care, is blood glucose values. The more data we have, the better our decisions can be and the more opportunities we will have to make adjustments in care to increase the amount of time our children spend with their blood glucose values in their target ranges.
You may also find these two sites provide you with some valuable information.
http://www.childrenwithdiabetes.com/clinic/care.htm
http://dictionary.cambridge.org/

As a parent of a diabetic child I feel that I need to refute some of the statements make by karencurtis. I also check my son’s BG levels at night. Not through paranoia as appears to be suggested by karencurtis, but through long and hard experience of finding low BG levels that do not wake him when he is sleeping.

Why bother testing during the long hours of the night? Well, why bother testing at all. What you don’t know doesn’t hurt you, eh Karen!

Having had the singular good fortune to have been born blessed with omniscience, and therefore having an unparalleled understanding of how diabetes affects everyone and not just yourself, I’m sure you understand that controlling diabetes in children is an entirely different ball game to keeping on top of the same condition in adults. Adults generally have fairly predicable routines. They don’t play football for two hours after school one night, and then sit still playing at their computer the evening afterwards. Both activities – I assume you understand – have entirely different effects on BG levels. Adults don’t produce growth hormones that make them insulin resistant in the early part of the night causing their BG levels to rise as they sleep. I’m assuming you understand this is different from the dawn phenomenon. I assume you know all about that too.

I assume you understand all about long acting insulin. You will, of course, know all about the peaks of action at lower doses of supposedly ‘flat’ basal insulins. You will know at what level of dosage this stops. You will, of course, understand that if the dose is titrated correctly there should be no need for supper – which should be bolused for in the normal way. Otherwise BG levels will run high all night. But then I suppose if you don’t do night time tests you would never notice that, so it wouldn’t matter – would it?

Gosh – as parents of children with a long-term health problem we just love being tired all of the time! This is exactly the life we would choose for ourselves and our children. We don’t do this for the good of our own health you know. We do it to keep our children safe. Anyone who has had a child with diabetes for long enough, and actively seeks out others in the same situation, will eventually come to know a child who dies of this condition. We are all trying to make sure our kids have the best chance – in both the long and the short term. This isn’t paranoia. This is love. We don’t mind the tiredness because we are doing it for people who are the most important things in our lives – not because we enjoy it.

I have yet to meet a doctor who suggests that we ‘relax a bit’. Mostly they seem to be permanently entreating us to get and keep the HbA1c level down. That can’t be done without careful attention to the nighttime BG levels. Maybe we shouldn’t bother getting an HbA1c done either. It might feed the paranoia.

Judge a parent of a diabetic child when you have walked in their shoes. Not before.

Oh i was one of those people who thought give some supper and levels will be fine through the night. We were discouraged by our team not to do night testing. My daughter lives a very active life style. She is a competitive swimmer and gymnast doing activity 7 days a week. We were reassured insulin had been adjusted to compensate for this, told she would wake and tell us if she had gone low.

One night i gave her usual supper. Levels were good. I awoke at 3am to a strange noise. It was my daughter not woken from a hypo having a fit. We had followed all the post exercise rules, extra carbs less insulin etc., her levels had been stable for the past several hours…and yet she still had a hypo several hours later .

Since then i check through the night. To enable her to continue with her activity she now wears a pump and sensors. The downloads can often show an unexpected hypo or hyper .I would be completely unaware of these and continue to believe that all was well in the night. I could take the stance of ignorance is bliss, if i don’t check what i don’t know wont matter. I will under no circumstance take this course. I value my daughters health and well being far too much, oh and her life.

Every parent is entitled to their choice of how to manage their child’s diabetes. I choose to check. I am quite happy waking tired most mornings, how ever i know i am doing it not out of paranoia but with the knowledge that blood glucose levels do not stay stable through the night. Supper or no supper, long acting insulin or pumping.

My daughter has a very good quality of life, manages many activities that her non D friends can’t. Diabetes is a big part of her life, does it dominate it…no? But she is very aware of how it can disrupt her life and if not controlled carefully can cause consequences. We don’t want to relax as regards to her care, we want her to achieve all she can achieve in life with her eyes always on the ‘diabetic ball’. That includes those ‘eyes’ working during the night.

Many parents have given their views on night testing in above comments, i really hope you have an insight now in how much care has changed over the years. ? Perhaps you could check your levels in the early hours of the morning to see what your levels are doing…you may get a shock. Perhaps you run your levels on the high side through the night to stop hypo’s.. Have a go and check are they in range, not above 10 and not below 4 ? I wonder……

… that is usually enough

Usually is correct, but usually isn’t always.
Too many pre-mature deaths due to usually : (
As long as people know the facts and can make their own decisions based on them.  

Karencurtis what can I say. I have to say I am in an extremely bad mood today due to tiredness etc. What I would like to say would not be printable so here is a slightly edited version for you.

Firstly are you normally this patronising? It sort of smacks you in the face ith it. Are you better than Olly and the rest of us parents who test at night I wonder? Do you have a child with type 1 diabetes I wonder, you don’t mention it, so I doubt it? I won’t however assume things as you have in your lovely message. I am loving your sentence ‘I have had diabetes for over 25 years, have three kids of my own and live with them on my own !’ Why the ‘!’ is it heroic you have managed to raise three children on your own then? I am also single but I only have one child, maybe I am not as heroic as you so will not put a ! after that sentence. I do however have a young child of 10 years old who has type 1 diabetes and has had since the age of 5 weeks old. I do know a bit about diabetes now and I do know that my daughter is under one of the most revered paediatric teams in the UK. I also know that they think night time testing is a good thing when possible. I also know that my friends daughter died from a hypo in the night aged 12. I also know a couple of other children where the same happened. I also know through studies that have been done on children with type 1 that the majority do not wake up when hypo at night. I also know I suffer from knackeration like Olly and all the other hundreds of parents who test at night. I also know that I will not stop testing at night until I am told that my daughter will 100% be ok during those 8 to 10 hours untouched. I also know I have a complete sense of paranoia about diabetes and will continue to do so, so that my daughter doesn’t have to and can lead as normal a life as her friends do. I also know that if I keep my daughter’s levels as within the normal range that I can do for the longest period of time, it will set her up to be as healthy as she can be and hopefully suffer no side effects from diabetes later in life.

I also know that being a pump means no long acting insulin. I also know it is vastly different these days than when you were a child with type 1. I also know it was hard for parents back then as well, as it is now. I also know that these days we have better equipment and better information and technology to help our children more than the parents in your childhood day could do.

Please do not ever judge a parent of a child with diabetes again like you have unless you are a parent of child with type 1. I don’t believe you are as you would have said I’m sure. It is very very different being the parent than being the person with diabetes. Don’t get me wrong I have no idea the emotions you go through possibly on a daily basis but maybe not as you are clearly not paranoid about diabetes but I do know that I would take it away from my daughter at any time and have it myself if I could as would all the other parents.
We get enough prejudice from those who do not know about diabetes. We do not need it from those who actually do know about it.

Olly, once again a fantastic blog and so very true to my life as well.

Re Karencurtis comment :
I do respect that fact that you are diabetic, and so have some insight into how difficult this condition is to manage, and you are, of course, entitled to your opinion, However, times have changed since you were little and the way diabetes in a child is treated now is completely different. The reason for this is that people have learnt that this condition is far more complex than had ever been realised.

To suggest giving some supper and everything will be fine overnight is really quite a dangerous statement to make. Yes, you can feed a child up so that they wont suffer a hypo – but at what cost? You cannot ignore the fact that if levels are high then complications *will* set in – so this would be, in my view, negligent. This is the reason why some diabetics who have lived through this sort of ‘advice’ are sadly now suffering from amputations and blindness, not to mention all the other complications.

Technology has moved on – even over the past 20 years – things are really much better now for a diabetic than they ever were – but the downside of this is that because we *know* more – we have to intervene more – or the alternative doesnt bare thinking about.

I am not sure what you know about insulin pumps – but there is no ‘background’ insulin or long acting insulin – so when things go wrong – they can go very wrong. So suggesting eating a supper and the background will sort it out is also not correct. Insulin pumps give people much more control of their diabetes – but they take an awful lot of hard work to keep on top of things – and extra monitoring and extra checks are all par for the course I’m afraid.

I am fairly sure that Olly and his wife do know that lack of sleep isnt good for any of them – let alone their lovely boys – but neither is going blind, having a seizure, or dying. I realise that is a shocking statement to make – but provides a very real dilema that all of us parents face every single night.

‘Learning to look after your condition’ is a little difficult if you are hypo and dropping fast and asleep…..not everyone wakes up when hypo and there is plenty of research to back this up. My son is 12 and on a pump with sensors and I could show you graphs that *prove* that he goes hypo through the night and if I didnt wake him and treat him then I dread to think what would have happened. I think I have read that Olly’s 2 boys are on sensors too, so I am fairly sure that he could show you graphs of both hypo’s and hyper’s to support their argument that testing in the night is not something they do because they are paranoid – it is because they want to make sure that their boys dont come to any harm, either now, or in the future. It is damned hard work looking after a diabetic child – and although the technology does help us enormously, it doesnt take away the fact that diabetes is a complex medical condition that requires constant intervention and meticulous monitoring.

It wasnt so long ago that the law changed and we were all told we had to put our children in car seats. There was uproar, with people banging on about their rights as parents to allow their children to sit how they wanted etc etc etc but eventually everyone started to follow the guidelines. So now, we dont hear of children being thrown through car windscreens and suffering brain damage or death, because children are so much safer in cars than they ever were. I liken this to diabetes. Over time, and with research and technology, things have changed enormously, and now we *know* that letting levels run high throughout the day or night is not advised and should be avoided at all costs. This is what ‘good control’ means. To ignore this advice would be a lot like letting our children be thrown through a car windscreen – and I dont know any parent who would want that for their child. With this amount of good care that we now give, hopefully there wont be diabetics in hospital wards in 10 or 20 years time needing amputations – and that is what we all want for our lovely children isnt it…….

re Karencurtis comment….As a parent of a young child with diabetes myself, I actually find your comments quite patronising. I don’t consider it paranoia to be concerned about your child’s welfare. From my own personal perspective, I would not leave my child for 8-10 hours during the day without testing, so I certainly won’t leave her for that long overnight, which in my own opinion is the more dangerous time. During the day you would *hope* to see signs of hypos/hypers giving you the opportunity to intervene. Obviously this is not the case overnight, and as Olly rightly states, both hypos and hypers for any prolonged period are dangerous.
Re your comment about long acting insulin, I’m sure Olly has stated in past blogs that his children both use insulin pumps so neither will be using long acting insulin.
The fact that you have had diabetes for 25 years means you’re obviously very experienced in managing your own diabetes. We all become experts in our own cases, but that certainly does not make us experts in anyone else’s. I think it is very wrong to make presumptions about someone else’s situation. What works for one is certainly no guarantee it will work for another in the same way. Offering help, advice and ideas are all fine, but surely that should be in a supportive and non judgemental way. I can never know how it feels to have diabetes myself, so would never assume to, but I do know very well the pain of seeing your child live with it day by day.

You have hit it on the head Olly: this is our life also , but easier for us as we only have 1 with diabetes not two. Like you we will not compromise our child’s long term health by allowing her to run high overnight, or risk her life by not treating hypos, for the sake of some extra sleep, however desired the sleep may be. We know the research shows that the better the control in childhood and adolescence the better the long term outcomes for those children. If, God forbid, our child develops complications , I want to be able to look her in the eye and say that I did my absolute best for her. What is sleep in comparison to my child’s future eyesight, kidneys, extremities, fertility?? This is the reality of having a child with diabetes. And I happy to say that by taking this responsibility for our child she is free to live her life to the full with diabetes in the background where it belongs!

Karen I feel your comments are a little unfair, from his previous blog I know these children use insulin pumps so your presumption that they are on long acting insulin is wrong and a little extra supper would not have the effect you describe here. My son has a pump and I test most nights as I know my interventions at night have helped to lower his hba1c, as parents we are going to do what is neccessary to optimise our childrens health now and for the future. As for independance, of course this is what we all want for our children but our example should be ‘best practice’, my son is 12 and taking these steps now, he doesn’t always test at school but the point is he knows he should. You are indeed right that people shouldn’t let their lives be ruled by their medical conditions, it is something I tell my son every day, but for his health and confidence I will willingly let it rule a large chunk of mine.

I also feel your pain, my 3 year old son often has night time hypo’s and hyper’s, he has no awareness, apart from when he wakes up, as he is soaked through when hyper. Which means, full clothing change, bed sheet change, more insulin, then testing again in an hour.

I also have a 21 month old daughter, (non d) but still wakes up during the night.

Our night time routine, is I test at 10, my husband tests at 1, I test at 4 and then of us tests at 7 when we get up to get ready for work.

My son is on an insulin pump, and therefore does not have long lasting insulin. So it is not paranoia, it is necessity.

Karen im glad you commented as we all have our opinions. But your advice sucks in a big way, your arrogance over diabetes is appaulling. But hey lets all take your advice and let our kids fall into hypoglycemia coma overnight…At least i can say i had a good nights sleep. I say the Parents are the doctors at home…they know best.

Thanks for a great perspective, Olly. Neal falls asleep on the sofa within 15 minutes of any movie… if it’s after 8 p.m. To the person who posted, accusing you of paranoia, I can only offer this personal observation: I have known far too many people (adults and children) who have died from nighttime hypos in the past several years. I don’t know anyone who has died from a daytime hypo. We checked Sam’s bgs at 1, 3, and 5 a.m. for 10 years, and Sam checks now that he lives on his own at the University. And guess what… I still wake up at 1, 3, and 5, and wonder how he is doing. Nighttime checking may not be everyone’s cup of tea, but imo, it’s the safety net until everyone has a continuous sensor or artificial pancreas. Fear of nighttime hypos? You betcha.

I am not aware of the age of the children you have i am sure i checked your article but could not find them. However after reading it i do feel a sense a paranoia within your household. Why keep testing, surely if the levels are good during the day, then it is more common then not that the levels remain good through the night. I assume you are using long acting insulin, and as long as they have some supper that is usually enought. You must be aware that being permently tired is no good for you or your children and sleep is vital to function correctly. You must also be aware that everyone needs to learn to be a bit independent and learn how to look after their condition to a degree and not allow anyone with diabetes to live their lives by it but to live a life and control it so as not impeed the quality of life. Believe me i have seen many a diabetic so caught up with timing of meals/injections etc that life becomes dominated by the condition. Life is for living whatever medical condition you have. I suggest listening to your doctors and relax a bit, and ease up on testing during the night. (I have had diabetes for over 25 years, have three kids of my own and live with them on my own)!

I feel your pain at having to do this every night x 2! Thank you for your brilliant post as it is so comforting to know that my wife and i are not alone and do exactly the same thing with our 3 year old. We are constantly made to feel admonished by the health care team as “other families” do not do this and made to feel hypercondriac by proxy! My son has been diagnosed type 1 for about 3 months now and still we are struggling to get the BM’s within the acceptable limits as he has been on the higher end of the scale more often than not and it is only in the last 2 or 3 weeks that we are starting to get the results.

We have experienced a few hypos during the night in the last couple of weeks and our health team are constantly telling us that if we were not testing then we would not know and tell us that he will wake up if having a hypo. My son has never woken up during a hypo even considering the possibility of him being aware at a higher level due to his history of hypers. Like you i am terrified of the possibility of the severe hypo and the rare yet possible fatal outcome. So we will carry on with the sleepless nights, the endless testing and constant “check if he is still breathing” watching over him. It is just so comforting to know that “other parents” do actually test during the night!

Love your post! Ah the memories…….I have to wake myself up as I no longer live with my parents (I’m 38 ;-) but I am just wondering, does your son get warning/symptoms for his hypo’s which cause him to wake in the night? Not suggesting this is the way forward but could help you get more sleep? Could also help him prepare for the the future when he will have to rely on treating himself? NB: I was diagnosed at age 12 so my Mum feels your pain (particularly as she had to test glucose levels with urine sticks!! lol!!)

Olly you wrote:
“the usual parade of obnoxious halfwits proving that they have far more ambition than sense ”
Are you sure that you weren’t watching a party political broadcast for the conservative party?!

sums up life with ‘d’ so well, the knackeration of it all and you have to do it twice. Thanks for sharing though…