Night Time Testing
Type 1 Diabetes

Type 1 Diabetes Night Testing – The Big Debate.

When my son was diagnosed with Type 1 Diabetes at the age of 5 and at every clinic we’ve been to since, we were told that night testing of his blood glucose levels was not necessary, unless something else was going on. So we have only been testing him in the middle of the night when he is either ill (then it’s every 2 hours anyway), is lower than expected when I test him as I am going to bed, or if his results aren’t adding up properly looking at morning results.

Night Time Testing

According to the professionals in this country night-time testing for Type 1 Diabetes is not necessary, but I just dare you to say that on a Type 1 Diabetes group on Facebook. Believe me the backlash will make your eyes water, and make you question just how terrible a parent are you?!

Every single night before I go to bed I do Fin’s finger prick blood test, as I wouldn’t be able to sleep worrying otherwise. According to our diabetes team this is more than a lot of parents do and is the ‘right’ thing to do. According to seemingly hundreds of parents on Facebook I should be setting an alarm for around 3am every single night to check Fin to make sure he hasn’t gone Hypo.

The question is who to believe? On the one hand the professionals are trained and should know what they are talking about, but on the other hand we as Type 1 parents LIVE with this every day, and often in my (highly debated) opinion know better than the professionals.

The reason for the conflict? I don’t have a medical degree and can’t fill you in on the professionals’ side of things, but ¬†know where the parents are coming from. Today I read a news story online that hit me like a ton of bricks. The sort of story that the parent of a Type 1 Diabetic child wishes they could unread.

The story was about a 19-year-old man who died in his sleep. He died in his sleep from what is known (and feared) in the Type 1 World as ‘Dead in Bed syndrome’. This syndrome is just what it sadly sounds like, it’s when a Type 1 Diabetic dies in their sleep, and is thought to be due to overnight hypoglycemia – although this has yet to be 100% proven.

For those of you who don’t know much about diabetes, the ‘ideal’ blood glucose levels are between 4 and 8, and anything below 4.0 is a ‘hypo’. When Fin has a hypo he needs to have some fast acting sugary stuff such as lucozade, followed by a snack with longer lasting carbohydrates once his blood glucose is back above 4, to keep it that way.

Untreated hypos can lead to seizures, comas and more. This is part of why I check Fin before I sleep, to make sure that if he is lower than usual or even hypo already I can deal with it. Dead in Bed syndrome is meant to be rare, but that doesn’t mean it won’t ever happen and to be honest every morning when I see my son move in his bed I feel a relief.

The question is though are the professionals right in saying that night time blood glucose testing isn’t necessary, or are we missing out on stopping more ‘Dead in beds’ from occurring because we follow the wrong advice.

This post today isn’t about me giving you answers I’m afraid, it’s more me trying to find what the general consensus on night testing is. The parents on Facebook often come across as a bit full on and bullying of those who say they don’t night test, and I am beginning to worry maybe I’m in the wrong? Have I been risking my son’s life for the last almost 6 years without realising, or are worried panicky parents feeding their own hysteria online?

Stevie x

36 Comments

  • Lizzie Woodman

    I don’t know the right answers either, I’m afraid – but what I do know is that constant blood glucose monitering sensors are where the future is and will make many lives easier. My husband now wears one all the time and, in conjunction with his pump, it has revolutionised his life. We have to pay for the sensors at the moment, but one day I hope they will be available on the NHS. Imagine having this linked up to your phone, say, so you could keep track of your son’s levels x

  • acornishmum

    It’s a tricky one! My son refuses to have a pump unfortunately, if we had one I think they were going to give us a cgm as well, but I’ve left it to him to make the decision if and when he is ever ready for one. It is after all him who has to wear it, and I can understand. I’m going to interested to see what replies I get on this and what the general consensus is!

    Stevie x

  • Ruth Goode

    Of course they are wrong to say it’s not necessary. My daughter was diagnosed 5 years ago aged 1. I’ve always night test, most of the nights she was fine but I’ve caught some hypos and of course hyper too which I have corrected (it’s also showed its lower her HbA1c) it’s personal choice but for me they should NOT say it’s not¬†necessary because I’ve caught some hypos I dreaded to think what happened if I listened to them. I’m so glad I ignored them and keep night testing for my peace of mind.

  • Clare Flexman

    My son was diagnosed last year and our hospital have never mentioned night testing.

    I thought as bedtime and waking levels were ok, he was fine in between.

    It wasn’t until attending a parents network meeting in London in March where the Dr speaking said night testing was important both to prevent lows but also highs that it made me think again.

    The long term implications from too high blood levels are worrying and a correction dose if needed in the night can help.

    So I thought, as an experiment, I would check my son at 3am for 2 weeks to confirm his levels were fine over night – we had always been told he would wake if low.

    Well, since March I have tested every night as, it appears, he does not wake if low and I have found many higher levels which I have been able to correct.

    Despite many adjustments to his insulin we rarely have good numbers through the night. There are just too many things that influence blood sugar levels!

    I hope this testing will improve both his long term and short term health and give me peace of mind I am doing all I can to keep him safe.

    While night testing is obviously a personal choice, if our diabetes experts aren’t consistent with their advice (as advice varies greatly from hospital to hospital) and don’t give us all the relevant information we cannot hope to make an informed decision.

    I will be interested to read other views

    Clare

  • acornishmum

    I can imagine it’s a lot more difficult with younger ones as well. It worries me how even with different Doctors you get different advice, and it’s hard to know sometimes what is the right thing to do. I think possibly it depends on the child, but then I could be wrong! I find with my almost 11 year old that I can usually tell if he will go hypo or not when I check him before I go to bed, but reading the news story today and seeing the input of others on Facebook I’m questioning myself now!

    Thanks for commenting Ruth, Stevie x

  • acornishmum

    Thanks Clare, I’ll be interested to see as well. It wasn’t until I recently joined some Type 1 groups on Facebook that I even knew so many advocated night time testing, I have always gone along with what the consultant and nurse told me to do with it, but thinking now I need to try and do what you have done and at least do a trial of night tests to see what is actually going on! Thanks so much for your input,

    Stevie x

  • Andrea Jarman

    I learnt about Dead In Bed Syndrome quite early on after my sons diagnosis, it shocked me it upset me and I obsessively looked for the facts, however they are few and far between. What is obvious is it is extremely rare so it’s important to keep these risks in perspective. I choose to night test at midnight and 3am. Not just for peace of mind but also to correct high blood sugars as well.

    Unfortunately we just don’t know enough about Dead In Bed Syndrome, there is some talk that it can be related to a heart problem that hadn’t been identified previously, in which case we could night test every hour but if it’s an instant death maybe all our night testing would be in vain any way….who knows? Though I’m not brave enough to take the chance of not testing at night….I’d never forgive myself. There are even reports of people dying this way even when wearing a CGM.

    One thing I know for sure the risks associated with high blood sugars are far more prevalent so I wonder if medical proffessionals don’t say too much about lows overnight for fear of parents running their kids high to avoid it…..I know it happens.

    Ultimately there is no right or wrong you just do what you can do and what you are comfortable with and nobody should ever feel judged.

  • Fidgetyfish

    1 child is newly diagnosed 4 weeks ago. I am astounded at the amount of testing going on in the night. My understanding is that diabetes can also be highly individual so each person will have peculiarities and awareness not necessarily mirrored in every t1. However what I see on forums doesn’t give me a full picture of circumstances, ages, other illnesses present etc and so insufficient info to make a comparison to our family. I have questioned my specialists several times about night testing in case I am being careless with my son’s health. If I am happy with bedtime numbers then I do not disturb him. I’ve been reassured that long term research has shown that blood levels may well be out of range overnight with no ill effect to complications risk so in order for some quality of life for everyone, have decided not to test at night unless something is out of the norm. I am flabbergasted at the number of times people are getting up in the night But at this moment in time, it’s not for us until evidence says to the contrary or our circumstances change. If % is low for complications then I see no need. It appears the debate on night time testing is as emotive as breastfeeding v. bottle. Each to their own!

  • acornishmum

    I agree about the judging Andrea, I hate that some people feel too nervous to ask about things they may be unsure of online as they worry about the response or backlash. At the end of the day I suppose we all do the best that we can do. Thanks for your comment, you make a lot of sense to me!

    Stevie x

  • acornishmum

    It definitely seems to be a heated subject, as soon as anyone online mentions that they do or don’t test at night there seems to be a backlash of some type from others. With so much conflicting advice on so many different things to do with Type 1 sometimes it is hard to know what the right thing to do for your own child is! I just wonder how sustainable it is for those that do multiple tests through the night, as surely that are headed for some kind of burn out?!

    Stevie x

  • Marion Stephenson

    I completely understand what you mean when you say you’re relieved every morning to see him awake. I feel like an over protective mum when i oversleep and panic to find my T1 son still asleep. That moment when you look to see if they’re breathing, it’s like how you feel with a new born except it’s forever. Then the relief when they wake. Doctors who tell us not to night test don’t have T1 children themselves.

  • Fidgetyfish

    I agree. I have 2 other children too and I would have nothing left in my tank if I got up all the time. Would end up worrying about my own declining health and how that supports anyone well if I’m ill. Other half works long hours so I shoulder all the home and school stuff. I’m taking onboard the advice of an experienced team plus 2 new friends who have had t1 kids for a decade. I feel they are well placed to advise with first hand experience. Neither test in night unless unusual circumstances. They’ve both moved on from mdi to pumps. Neither uses CGM. Pump trial is our dream but no staff to support locally at the mo!! They have good numbers and % (when their teenagers are on track!). Have faith and conviction in your own information gathering and gut instinct as a mother. Advice is free from everyone so it can be discarded if you don’t like it!

  • acornishmum

    It’s hard isn’t it? I try hard not to dwell on any of it too much as I want to make life as normal as possible for Fin and I want him to grow up believing that he can achieve anything and never let his Type 1 stop him, but we al have the moments I think where the unfairness hits us, and so does the worry! He makes me proud every day with how he copes with it all though, and he is so very strong that there’s no way I can’t be strong for him as well.

    Stevie x

  • acornishmum

    I think after reading a lot of what people have said on here and on Facebook, for my own peace of mind I will be doing a little more night checking, just to make sure he is doing as well as I think he is, but I can’t see me ever being a test every nighter other than before we go to bed, not unless I think there is anything to especially worry about. We have actually been offered a pump, but Fin wasn’t willing to try it and at the end of the day he’s the one who would have to live with it, so I have left the decision up to him and will support him in it.
    Stevie x

  • Claire

    Always starts a debate doesn’t it but I strongly feel that any parent needs to make their own mind up. I was told not to night test by ‘Professionals’ too but chose to go against this advice. At the end of the day if they are wrong, what will they say?? Sorry!! Hmm not sure that really cuts it! Although saying that, if you choose not to night test you shouldn’t feel bad for it. It’s a personal decision not to be presumed by processional people either way. I felt our team should have given us more knowledge about the debate and encouraged us to make our own decision! Xx

  • acornishmum

    I can definitely understand where you are coming from Claire and I do get frustrated by the fact even the professionals seem to have different opinions amongst themselves, but I guess we have to all do what feels right to us. I am going to start doing a little bit more night testing, just to see whats going on and to make sure I’m not missing any lows, but mostly to reassure myself. It’s so scary having to make the decisions that we do sometimes! Thank you for commenting lovely,

    Stevie x

  • Marion Stephenson

    Yes we should all do what is right for us.
    I test every night between 11-12 when I go to bed, if his levels are around 7 or 8 I’m happy to go to sleep but if it’s 6’s or lower I’m uneasy and set alarm for 2 or 3am to check again. A couple of nights ago I tested at midnight, then 2am then woke him at 4am to have some sips of juice as he was low 4’s. No two nights are the same so we do what feels right for that particular set of circumstances.

  • acornishmum

    Marion that sounds pretty much identical to our nightly routine! I think he must be having a growth spurt at the moment (he grew 3cm between clinics last time!) as he’s running higher at night, so I’ll be doing some night checks to double check it’s okay before upping his lantus. I do think I may do a few more random ones as well though, just to reassure myself his levels are doing what I think they are over night!

    Stevie x

  • Kathryn Mead

    Hi sorry this is long winded,

    I have a couple of questions:- Would you not test for 8 hours in the day? Would you not treat a hypo in the day when awake and hope the body corrects it? Would you leave highs in the day and not correct?

    My son was diagnosed 6 1/2 years ago aged 9. Nothing was originally said about night testing, it was just a random night a few weeks being at home, I had this overwhelming urge to wake up and test him. He was 2.9, from that night on I night tested. He was on Novomix 30 at the time. One particular time he had an abnormal amount of activity, he dropped hour after hour, each time treating to stop dropping below 4, this went on for some time, at our next clinic we did the usual, height, weight HBA1C check, we would then usually go into the consultant then the DSN and Dietitian, this particular time we were pulled straight into the DSN and was given a dressing down because his HBA1C was 6.6 that the consultant would go mad, because that meant too many hypo’s! The consultant actually high fived my son! My point is now 6.6 is an amazing HBA1C and we are encouraged to get this, but about 5 years ago it was frowned upon, just 1 of the things that have changed in the 6 1/2 years!

    DSN’s, Dietitians, Consultants are professionals – however their opinions on treatment and management are usually influenced on the most recent training day they had been on based on “New Research” for one college or another. It is only natural when being new to T1 that a parent would want to do what the professional said and be apprehensive to take advice from other parents, it’s just a natural response, they are specialist and know it all right?
    In the 6 1/2 years we have had many changes of what “Is the right thing to do” Originally to treat a hypo you would have to have a 100ml hypo juice and 10g snack, we soon realised this didn’t work for our son and only ever treated with juice, clinic after clinic they would tell us we “Should be giving a snack bla bla bla” then one day I had happened to given him a snack with juice, possibly because he was about to do activity, to which they said “New research say’s that you shouldn’t give a slow release carb with a fast release to treat a hypo”!!!! Another one was when my son went onto MDI and had to take his Lantus at night, he would go super high before bed and with correction would drop by 2am to 4, I would treat and test again in an hour and he would be a 3.9 or 4, so would treat again this went on every hour, every night for a good month or more, I was exhausted, I would call the DSN and tried everything they suggested just to prove I was right that the Lantus needed to change to morning, when we went to clinic I said that I believed the Lantus is what was causing the drop because it is designed to combat hormonal spikes in the night. The DSN was adamant that due to research Lantus would not cause dropping!! She tried to make us go on a split dose which my son refused, so after a couple of days backed down and agreed to help me swap to morning Lantus, We had no dropping in the night or highs before bed by swapping to morning! The other thing was night testing, we were told that the bodies Liver would release sugar to correct the hypo resulting in random high morning blood sugar, but in the last year have been told that actually they are not sure this is the case. I could go on…

    My point is just because the DSN or Consultant says it doesn’t mean its right or will work for you. You need to trust yourself and how you know your child, you know what works and what doesn’t, how things effect your child. I was once asked by the dietitian on the occasions above where he was constantly dropping if “I had tried to leave him to see what happened” I told her I could do that if she was prepared to take responsibility for any outcome from that, she soon back tracked and agreed that I should keep night testing, which proves she wasn’t 100% confident that something wouldn’t happen. It is hard in the beginning, luckily I have a friend whose son was dx a couple of years before Tom so between her and the DSN I learnt what I needed too. Don’t completely dismiss advice from those parents who have been on this road for a long while, however again, it’s taking what works for you and how you can fit that into working for you? A lot of the time it is trial and error to see what works for your child and then that’s never set in concrete as we all know that there are soooo many effecting factors.

    Tom is not hypo aware whilst sleeping, I even tried to get him to wake up and get used to testing himself, but no 2 alarms in his room and he doesn’t wake to either! I personally am not prepared to take the risk. Not only am I trying to prevent anything happening to him in the night, I am also keeping control of his blood sugars, being able to treat hypos and correct highs. He is now on the pump and this does make life a bit easier during the night.

    Don’t get me wrong, our DSN and consultants have also been amazing in the past and are now, but I take what I think is useful to us, I will try things their way sometimes, sometimes it works other times it doesn’t, but I would not try anything at the detriment of my son, especially with night testing, I have personally experienced him dropping and being hypo in the night, I would hate to think what could have happened if I hadn’t have night tested on those occasions.

    I can’t see how professionals can say no long term effects from being high or low in the night, too many hypos and cause the loss of hypo symptoms as the body gets used to it, high blood sugars can cause long term health complications and in some ketones. If this was right then why do we have to bother in the day?

    The other research I have read on DIB is that neuropathy can be a cause, this is something that mainly T1 Diabetics get and can cause DIB. Maybe this is something that should be included in our children’s annual checks?

    http://www.nhs.uk/conditions/Peripheral-neuropathy/Pages/Introduction.aspx

    I worry about when he is old enough to leave home, after today I think I am going to ask to see if they can apply for funding for a CGM.

    I personally think everyone should night test to start with, if your child wakes when high or low then you may not need to, but if your child doesn’t then I feel you should. This is my personal opinion and not a judgement on anyone, it doesn’t mean I think badly of anyone who doesn’t because it is a personal choice.

    Again sorry it’s so long x

  • Kathryn Mead

    *was meant to say without correction would drop by 2am, can’t see how to edit it. Sorry x

  • Sabina

    We don’t night test (unles DD is sick) we do a night test every 2-3 weeks

    Our DD is fine through the nights so we don’t want to disturb her and her sister more then we have to

    Me and hubby refuse pump (will be DD choice when she is older)

    I do believe all mums/dads do what is right for them and their children. And it’s nobody’s business if you night test or not :)

  • acornishmum

    Thanks for commenting Kathryn it did take me a while to read lol but a lot of it really makes sense! I did do night checks with Fin for at least the first 6 months and I still do if he’s not at a level I expect when I go to bed. I suppose a lot of it depends on how predictable and steady your child’s results are. I also know what you meant about conflicting and different information from type 1 team, I do sometimes feel that I’m suddenly being told at one clinic that something is the way it always has been or should have been, but it’s something they’ve never told me before.
    I suspect to be honest there aren’t enough Type 1 consultants, they deal with so many people at so many clinics it’s hard to even vaguely have the personal touch or to always have enough time to chat properly. It’s also hard when you live with Type 1 day in and day out to take advice from people who will never really 100% know what it’s like or seem to tailor things individually to your own case. What works for one family might be a disaster for another!
    Some of what I do with my son is different than they advise, but like you said it’s what works for us!

    Stevie x

  • acornishmum

    I can understand not wanting to disturb them, luckily for me both of my sons are ridiculously heavy sleepers. I can test Fin’s finger, trip over something and say rude words loudly in their room and neither of them stir! ;) I think everyone seems to be on the right track in it’s down to each individual family, what works for them! Fin doesn’t want a pump and I respect his decision, he may decide he wants one when he’s older but for now we do okay as we are anyway. He’s happy, as healthy as he can be, never stops running around which means on non rainy days we have no issues with highs, and makes me proud every day with how he copes!

    Stevie x

  • Fidgetyfish

    I can’t help but wonder if continuous monitoring is the way to go for those who like/need to test during the night otherwise it is still only a series of snapshots. Every few hours during the night means there are periods when there is no information on what is going on between finger pricking. There is no real activity bar sleeping and no eating so no I wouldn’t be testing at night if I liked the bedtime number, same as I wouldn’t test during a boring day of low level activity unless something untoward. The dead in bed article should be read in context. What I took out of it was that it wasn’t even proven! There is little written about what is expected to happen with numbers during a ‘normal’ diabetic night. Daytime is when everyone is working the numbers hard… Diabetes is a moving target and we all just have to give it our best shot based on the information we’ve gathered and our own experiences.

  • acornishmum

    Very true! Adding in the fact that not every test is 100% accurate, Fin can have a difference of 4 or more between hands sometimes even after washing them (for a nice change urghh!) Sadly it depends on where you live as to whether you ave a chance of a cgm, Fin was offered one along with a pump but he refused as having been injecting since aged 5 now at almost 11 he’s used to it and hates to look different, so to him a pump is a symbol of being different. A shame really in a lot of ways, but I support him in his choices as he has to live with it.
    Stevie x

  • Samantha Verrall

    Always such an emotive topic. Conflicting advise from professionals is not helpful and I obviously only have my own consultants advice to go by. Soon after diagnosis of my then 5 year old daughter (a year ago now), I was horrified to read a story of a Type 1 Diabetic dying in their sleep due to a Hypo. I therefore raised the question of night testing and have done so a few times since. Their advice is always the same – is it is not necessary – unless ill, changes to insulin ratios etc., or worrying readings that day and then to test at my bedtime and again at around 3am. It is so so rare for death in sleep to happen (although not a total impossibility) and I have to keep this perspective or i would worry myself ill and spend all my time fretting. I do not night test (currently). My daughter has not hypo’d in the night to my knowledge i.e. has not woken up. Does this mean in one year her BG level has not dropped below 4.0 during the night? Or that it has but her body has self corrected? As a matter of interest I may do some occasional extra checks just to see. I support those who are up many times in the night for their own reasons be it hypo unawareness, peace of mind etc. This support should work both ways. I do not feel that I am not giving all the care my daughter needs, most of everything revolves around diabetes now!, but I know that if her and me were regularly up several times a night we would not be able to function and I would not wish this to impact on quality of life. We can only do what we believe is right and change or amend our actions as we see fit. My biggest worry is that despite all our care and advice one day they will lead independent lives without us. We can only hope they continue to care properly for themselves and arm them with the information they need to live with Type 1. This to me is a far scarier prospect than ‘dead in bed’ syndrome.

  • acornishmum

    Very well said Samantha, I’m the same and think I will do more night checks for a while just to make sure everything is as I think and going okay, but I don’t think I will ever be a test every night person as my son is mostly predictable in his levels by what he is when I am going to bed, but it never hurts to just see what’s going on!Fin does have hypos sometimes at night, but he is always either low when I am going to bed or it’s when I check him at 3am ish because I could tell he might go, although we manage to avoid it sometimes by waking him for a quick snack in the middle of the night (his poor teeth!) My son was 5 when he was diagnosed and now 11 next month, and I can just imagine the year you’ve had, it takes some getting used to doesn’t it?!

    Stevie x

  • Emma

    Hi, I can’t give you any facts really but all I can say is I found out about dead in bed shortly after my daughters diagnosis and have night tested every night ever since.
    Most nights im treating high or lows rarely a normal night! I ask myself would I leave her for 8-9 hours in the day if fasting and resting, no I wouldnt, would I leave a low to see how her body responded, no never, I do not trust type 1 I know for my daughter it can change very quickly so far no admissions for hypo or hyperglycemia and I think the more checks the better. I know she will not follow suit as an adult and I know I’ve aged about 30 yes but I’d rather that and have peace of mind it makes me feel better knowingknowing but what’s right for me isn’t right for all!

  • acornishmum

    I love how reasonable everyone is sounding in my comments, unlike other places online where people seem to want to tell you their way is the right way or only way! I think age can have an effect as well, my son being almost 11 now and having coped with it for almost 6 years is a lot more predictable than he was when he was younger, or in the first year. Back then night testing was more of a must. I do think it’s whatever works for you and your child, and I’m not going to judge anyone for night testing or not night testing. With my son he has cereals for a bedtime snack, and a novorapid injection as well as his lantus one. I find the novo stops the highs mostly and the snack which has a different carb ratio so the cereal carbs that aren’t covered keep him from going hypo overnight. It’s taken us a while to get the balance right but it mostly works!

    Stevie x

  • Andrea Jarman

    After my comment yesterday saying my son rarely hypos at night…we know due to having the libre….last night I tested at 11pm he was 6.8 ( a lovely number you would think) I went to check again at 1.30….he was 6.4….do you know what he was between? He had spent 75 minutes low between those times…the lowest being 3.2. Between 1.30 and morning he rose to 8.2 and was back down to 6.4 by morning…and that is with very good basals that usually mean fluctuations of no more than 1.3 either way throughout the whole night. Fabulous that he came up himself….but what would have happened if he’d excercised more during the day or he had some insulin on board from a bedtime snack?

    Having said all this before the libre i actually tested less at night…2 reasons (bedtime numbers and morning numbers were fine and secondly poking which woke him was a pain in the ass) the libre has shown us no 2 nights are the same and even between 2 checks you can have the same number but that doesn’t mean things have been stable.

  • acornishmum

    That’s scary Andrea, as being the same when you checked and when he woke up, if that was me I would have just thought he’d had a really steady night! Fin is mostly steady during the night, if anything he runs a little high. Not helped by the fact he often decided to have a big bedtime snack…the only downside to him becoming more independent is he doesn’t always want to listen to me! He has an injection to cover the carbs but obviously high as it takes a while for the insulin to kick in.

    Stevie x

  • Sarah Christie

    Wow read your post and then all comments Stevie this is so scary, at first we tested during the night for a couple of months now we only do when Jack is ill or having an odd day. It is so scary, I like him to be 10 at bed time to give him the leverage but what is the right answer ? I don’t know x

  • acornishmum

    I feel the same Sarah, it is pretty scary, but then I think some children are a lot more unpredictable than others. I can usually tell what Fin will be in the middle of the night and the morning by what he is when I am going to bed. Reading what every one has said though I have done a few random middle of the night tests recently and he was fine phew! Let’s just hope they hurry up with that cure so no one else has to even think about the dilemma!

    Stevie x

  • suzy manzano

    my son was diagnosed just recently. he was confined in a hospital near our home because we found out his urinalysis has glucose and we did fbs which confirms the type 1. he’s 8 yrs old. when he’s at the hospital he has 4 insulin injections a day and a numerous testing on sugar. when we are discharged the insulin was reduced to 2 a day and testing are done before meals and bedtime. the pedia endocrinologist told me if the glucose is below 150 during supper, no need to check at bedtime. but I reject to obey, I still checks his sugar before bedtime and let him eat a snack and drink milk. I didn’t check glucose during his sleeping hours because nobody tells me what to do. but, i’m awake every hour of the night just to check on him. because I experienced him having a low blood sugar and he wakes up chilling and cold. and he doesn’t recognized me and my husband. ( this happened twice already early this year and we are not yet aware that he has diabetes that time.) right now, after reading all your posts and comments, I will check sugar in the early morning just to make sure that he wont be high or low during sleep. thanks for the info. god bless us and our children.

  • acornishmum

    It is hard sometimes to know what is the right thing to do, and the advice differs so much. I think as parents we just need to do what feels right to us and what works for our own children. After all, all we can do is try our best.

    Stevie x

  • Alex H

    Really late to this discussion but was doing some random searches on the topic and you came out top. Our son was diagnosed with T1D two years ago (now aged eight) and we have religiously tested every night at 3am since he was diagnosed. Most nights he is high and we correct but about once a month we have to act to avoid a hypo – he is on a pump and this makes him sail closer to the 4-8 bracket than with jabs where he ran a little higher at night 10-12. Coincidentally my cousin is a paediatrician who specialises in juvenile diabetes and he said that we should monitor his levels at night. However he added that most parents say they do but do not – he can see that from the results he examines on a daily bases. My wife and I both work so we share this task and are constantly tired but what is the alternative if he had a hypo in the night. It’s so hard but in my mind there is not an alternative, nor could I sleep without the reassurance of knowing he is OK. Of course only one family’s experience and by golly do I feel for everyone else going through this. On a side note it helps us think of his situation as “our normal” ie: everyone has challenges and this is ours – its normal. Warm regards to others reading this – hope it helps.

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