This is About Dying in the Middle of the Night….LETS TALK: We Need to Help Each Other.

 

blue candleThis is a discussion, a tough discussion, but hiding from it WILL NOT MAKE IT go away.

When I read a comment like; “….my child was diagnosed a year ago and I set my alarm to wake up 3-5 times to check, just to be sure……”; I am compelled to say something.  And there are other comments like this that I have read.  A dialogue should be had, and I seek input on this difficult subject from our community.

This may be tough to read but perhaps we can all help each other.

The rules:  There is no right or wrong—-anyone can say anything.  This is for all of us to learn.  What do you think, what do you feel, and what do you do?  Please ‘reply’ here and not on the FB page so all can read. 

To be very clear, if you feel you must wake up numerous times than the call is always yours.  Is it wrong or right has to be your decision.  But as the late (and great) Dr. Richard Rubin taught me; everything is a balance.

How long can ANYone wake up 5 times a night?  There is a balance and you should discuss with someone who can advise you. 

Can our children die in the middle of the night from a glycemic reaction?  Yes.

Is diabetes a disease that can cause this?  Yes.

The balance must be found to know how to monitor. to the best of our ability, a point where we feel comfortable that we do not to stand over their bed.

I, (me, my opinion only) always felt that giving my kids the keys to the car was one of the scariest times in my life.  I hate cars.  They kill.  I mean really kill.  It was an absolute fear.  I have picked up enough bodies from my firematic days, and seen the horrors enough time.  I fear them.  I hate them.

Got it?

I also know that getting your license is a rite of passage.  I needed to find a balance and i searched high and low for it. 

FOR US, diabetes through the night is the same thing.  It is a struggle, it is a balance.  It is finding when can one person wake up; when can another. 

I have said this a thousand times; we can and do not live in that fear.  To we recognize it?  Absolutely.   We (and I include my children in this) do not live in the fear of dying in the middle of the night.

I am speaking from conversations that I have had with them.  Are they afraid that it could happen?  You bet.  They respect the fact.

Let me say that again, they respect the fact.   That means that they do what they do; we do what we do; all to take te steps to make sure that it doesn’t happen.

But it is not a life of fear.  We do not ‘just think’ they will wake up if they are low.  We check. We take turns. 

I cannot tell you the ‘routine’ that you need to find.  I JUST CANNOT TELL YOU WHAT YOU CAN DO….but I can share with you to start to find the balance.  If you live by the fact that YOU MUST wake up 5 times a night; I will not tell you not to do that because you will not hear me—-I will tell you that you should start to discuss with others. 

Why do some people wake up once a night and seem okay about it?  Do people who lost a child wish they did things differently? 

Today’s article is to commence a dialogue; not to tell anyone what they are doing wrong.  I seek input from EVERYone so people know how to find that balance.

Good luck to all of us as we battle this ugly monster.  Please share what you feel.

I am a diabetes dad.

Please visit my Diabetes Dad FB Page and hit ‘like’.

0 thoughts on “This is About Dying in the Middle of the Night….LETS TALK: We Need to Help Each Other.

  • Kathy Adkins says:

    I check during the night, but sometimes I sleep through my alarm :(. Last night, my 17 yr old went to a festival, lots of walking around, etc. He left the house at bg 218, came home 3 hours later at 100; gave him a 1/2 c of milk because I knew he could keep dropping due to all the walking around… the 1/2 c was not enough; at 4:55 am he was 52 – he woke up on his own – some kids bodies do not react this way, they don’t wake up when their bg drops. So far, we have been fortunate that my son’s body wakes him up when we miss a low. I think each family is different. You do what works for you and your child. I am “friends” on FB with several Moms/Dads who have lost their T1D children due to low bgs in the middle of the night…my heart breaks for them.

    • Vanessa Kemp says:

      We stopped testing in the middle of the night because my son hated it and it turned into a fight. We have learned that if he goes to bed ina ccertain range it isnt necessary. Our goal is to get him in that safe range before he goes to sleep and that is what works for us.

  • I have 2 kids with diabetes. It is still my greatest fear that they will pass away in the night from a low blood sugar and it causes me GREAT and constant anxiety. I can’t relax and sleep well. I’ve been doing this for 13 years and still get up frequently at night. I get sick frequently due to lack of decent sleep. I never say anything to my friends because I’m afraid they will think I’m being dramatic about this disease if I were to mention that one aspect of diabetes is that our kids can pass away from a low blood sugar and that night time or sleeping is the scariest time of all.

    • I know exactly how you feel. Everytime I walk in my daughters room I hold my breath til I see her breathing. I don’t care how much sleep I lose, I do not want to lose my child. I even change the bolus on her pump when I have to do it in the middle of the night for fear it’s too much. I woke up an hour before my alarm would have gone off once and had a sense of urgency to check her. She was 44. For no reason I could think of. It frightened me so bad I could not sleep that night. I always say my daughter DOES have a monster under her bed. The diabetes monster and I am ready and willing to fight it every night.

      • It’s a scary life we live, isn’t it? Thank you for sharing your story too. I feel so lonely sometimes in what I call our “private hell”. What a mess we are all in. 🙁

      • I do the same thing, hold my breath when I walk in the room. Sometimes my heart just pounds as I walk towards his room. On two occasions, I checked in the middle of the night and he was in the 40’s. He had gone to bed at a “safe” number and there was no concern of a sudden drop in blood sugar. I always say “there’s only one Alex”, and there is never a 2nd chance when it comes to your child’s life.

    • Reda Sue Fraser says:

      You are not being dramatic about this disease. I have a T1 grandson. He is almost 5. My daughter gets up several times a night to check him. Dave usually stays up til 11 or midnight to check him before he goes to sleep, and then Christy gets up at least twice during the night. She occasionally sleeps through her alarm. She fights anxiety all the time. I try to do little things to help her during the day. My heart breaks for Moms and Dads of T1’s. It got scarier for them when a co worker of Dave’s lost their young child during the night, and they were not even aware that the child was diabetic. Love and hugs to you.

  • Thanks for sharing, Tom. I think the middle-of-the-night BG checks is the greatest source of guilt for most parents. If I do it less than another friend, I am shamed by that friend for not doing enough. If another friend checks 4 times they are praised for being such a D Warrior.

    We sometimes forget that, “Your Diabefes May Vary”. My son has pretty stable overnight numbers. Just because I don’t check as often as someone else doesn’t mean that I don’t care about my son. But because I don’t check as often, if something does happen (God forbid), I am sure that I will be shamed and mocked because I didn’t do enough.

      • Pam Loebner says:

        Jodie,
        I believe we all do what we think is best for our children. Nighttime testing is a personal choice. No one should judge you by the choices you make. You are a loving and caring parent doing the best for your child.

        • I check in the middle of the nights only if he is sick. We have a number that he needs to be in the evening so he won’t go low in the morning. He has however had four seizures and all while taking naps (not bedtime). Thankfully he has always woken up from a low but I don’t rely on that because I know it might not happen always. My endo told me that the more t1d’s go low the less likely they will be able to detectect the lows. Not good!! With my type 1 it really all depends on what is going on with him, is he sick, has he been really active, and what were his numbers before bed.

  • My daughter was diagnosed at 15months old seven months ago. We set an alarm ro monitor her bg every two hours. We did this religiously until her first clinic three months later. There the nurse told us that if her numbers were ok on the last check before bed then we don’t need to check her two hourly. In fact she told us that once a week would be ok. This scared me but I knew I had to do it otherwise I wouldn’t ever not do it. It took time to get used to it but now if we’re happy with the check we do as we go to bed then we don’t get up in the night.

    We check her if she’s crying in the night and then maybe a couple of times in the week just so we know what’s on. I understand completely the fear but that’s the same fear I had when moving her out of our room into own the first time or when you leave them with someone else for the first time ( before she was diagnosed).

    You need to be able to function as so does the child. Disturbing 5 times a night will not help you function properly the rest of the time but I can understand why those that do, do.

  • I have been T1 for 54 years (dx’d at 8 months) and I have slept all night, every night the entire time. So did my single mom when i was a kid. And sure all of my youth was before meters (cell phones too) and my management one-shot a day of NPH from a glass syringe and Clinitest. But that’s the point. I’ve never had a problem because my routine was locked in at an early age. It saddens me when I see people (of good intentions) become a slave to D. I have no complications and zero worries. To this day my one and only meter stays downstairs when I go to bed. So does all food. I use a pump but don’t need a CGM. Like you say, it’s a personal choice and this is mine. I wonder though if people seriously consider all approaches. It’s an interesting question.

    • Barb Peterson says:

      I am kind of the same but with different outcomes. Being diagnosed 41 years ago we only had cllinitest and glass syringes. I remember peeing in a cup and lining up the droppers and hoping it didn’t turn orange. It was like a little science experiment! My parents would never have DREAMED of waking up in the middle of the night to check on me. My mom had 8 kids and this was the early 70’s. I do have a pump now. I don’t have retinopathy or kidney disease but I do have gastroparesis.

  • Valerie Hall says:

    My 6-1/2 year old son was DX on 2/15/2012. Since day 1 we were told “most parents check around 2am the first couple weeks and then not so much.” I was horrified by that! While I understand there is a balance….when I signed up for the job of Mother, there was an understanding that it means, love, nurture, teach, protect, care. The curveball of diabetes requires much more vigilance. No matter how tired, I will NEVER not check. It is my job, my duty. Have I slept through an alarm? Yes! Do I feel horrible about it? Yes. But I am human and realize it will happen now and again. I just check the moment I wake up. For us, it is a necessity. I am thankful I have a child to check on….the outcome could have been that we lost him before we knew he was T1. We were lucky. I will take this gift of his life that we have been given and cherish and honor it — through the blurry eyed middle of the night stupor….I will do all I promised the day I became a Mom. I am a diabetes mom!

  • i never got tested as a young child on mixtard and still here. The thing is D.I.B syndrome does happen but it’s extremely rare (jdrf manipulated those statistics its not 1 in 20 of all type 1s under 40 will die from dead in bed but 1 in 20 of all deaths in type 1s under 40 will be hypos that is very different) our liver can respond if it didn’t we’d have a lot more children dead who were on the older insulin like NPH.

    On the other hand i can understand the absolutely unimaginable guilt a parent would feel if their kid died from dead in bed but the reality is you can’t carry on waking up 5 times a night. i had a restless sleep last night and woke up 5 times and i’m barely functional today but i also understand the fear i have nocturnal hypounawareness and can easily be 1.8 when i wake up and luckily i naturally wake up at 3 am (weird habit) and test then. there is no easy answer to this unfortunately it just will always be a sad reality of living with type 1 diabetes and it is individual

    • My daughter was diagnosed a little under 2years ago. It was so overwhelming and just when The doctor told me I could sleep through the night shortly into it unless she was active or I was checking basal rates. Then I read on Facebook that someone’s child died due to this dead in bed syndrome. The next day I called the diabetes doctor to find out why they lied…they told me that while it was rare it does happen. However, in her three decades of working at the diabetes center they have never lost a child to it but have last children to ketoacidosis. Now I had some serious anxiety. However, over the last year, I have come to my own conclusion as each person/family should. I decided that I would get up with her throughout the night for as long as I could and as long as she would let me. I don’t like to wake or rouse her unnecessarily so she wears the sensor and I will read her pump during the night sometime depending on the number it’s reading and I don’t put her to bed without having ER at a certain number. I will have plenty of time in my life to sleep through the whole night.

  • Parth A. Eubanks-Leach says:

    I am told that my 10 year-old daughter’s blood sugars will stabilize as she gets older. We have been checking several times, every night, for the past 7 years. Her blood sugars will be good for 3 nights in a row, and then will start going high or low. When she stabilizes, I hope to sleep and only get up at 3 am for a check. Until then, no one will get e to stop doing overnight checks.

  • Like many, this is my greatest fear… that my child will not wake up in the morning due to Diabetes. I think it is the under-lying guilt behind that fear, is what I truly fear the most… that I could have prevented it from happening IF I had woken up and checked more often. It’s a personal struggle, and it varys day-to-day. Most days, I am comfortable with his number going to bed, and I will sleep all night. Other days when he is too low at bedtime I am more anxious and will stay up late enough to check just one more time, before going to bed myself. Weekends pose another fear – in sleeping in. Those mornings can be nerve-wracking until I go in and make sure he is still breathing. Its a never-ending nightmare. Do I wish I didn’t worry? YES! DO have absolute-faith that God has my worry – I like to think so, and I know its true.. .but sometimes I still worry. I am his mother, and he will always be my baby…. and even though I would not have chosen Diabetes for my son, God did… and we will use that for the greater good…. no matter what the reason may be.

  • Pam Loebner says:

    Tom, when Sarah was diagnosed and finally got into a room, a young nurse came in to talk to us. In the course of her questions and statements as to why she was doing certain things, like checking Sarah’s blood glucose levels, she told Sarah that I would probably check her at night sometimes because she could not wake up due to dead in bed syndrome. At 9 1/2, Sarah heard that, her eyes got really big and she asked if I would check her every night. I promised her that I would check her throughout the night, which I did for 10 years, every 2 hours because of hypo unawareness. The last couple being when Sarah was home from college. I still check her when we are together, not every night, but I still wake up, whether she is home or not. I wait for the weekend phone calls or daily texts that are just to say hi, still breathing, going to breakfast before class. Sarah is still hypo unaware, but sets her own alarm to wake up. The one time, her first semester at college, Sarah didn’t make that weekend call. My gut told me something was wrong, but my husband said she was probably busy and that is why she didn’t call or answer my calls or text messages. In fact, Sarah was practically unconscious, non responsive and had to go to the ER. No drinking involved, just one of those things not expected since she had eaten pizza with very little insulin on board.

    She hasn’t missed a call since. I have never gone to bed without thinking about what could happen. BUT I don’t call her every day. She reaches out to me. Our system works. She feels like she has and is in control. Sarah asks for help when she needs to.

    Never had happened before

  • Until we got a CGM for my daughter- age 5- we checked 4-5 times a night. My husband and I take turns with the “night shift”. My daughter has never had a steady pattern overnight and does NOT wake up with lows. I have caught lows in the 30’s in the middle of the night. For my family it absolutely makes sense to check. Even with the CGM we set alarms to check the CGM.

    I would not consider letting her go 8 hours during the day without checking- What makes nighttime any different? However I also know many parents who have seen a proven pattern in their kids overnight numbers and feel safe not checking. That is their decision and I don’t judge that- it’s just not right for our family.

  • Donna Shuford says:

    I have three children and a hubby with T1. I don’t set any alarms. They all check at bed time. I like them to be around 200. Chocolate milk seems to work best, but with summer here, ice cream nightly seems to be working great too! Anyway, my bladder wakes me up as four kids will tend to do that. I go and check them all. They all have signs that I know to look for. If I get that gut feeling I will test them. My husband checks them again at 6 when he leaves for work. We very rarely have morni g lows. But, it does happen because D doesn’t always play fair. My middle D child has had night time seizures. We’ve used glucagon on everyone. And, this works for US. I sometimes sleep through the night. That’s ok too. I need sleep. My D kids are 12, 9 and 6. I’m on my 14th year of living with D since that’s when my hubby was dxd.

    • Donna, I am like you. My son was DX 3 days before his 6th bday and he will be 14 in October. He manages his own care during the day and does a fantastic job! His average A1C is around 6.3-6.6 over his last 4 3-month appts. His issue is during the night. He is not a “regular” with his numbers. He can go to bed one night at 150 and wake at 360 and then the next night go to bed at 150 and wake at 52. There is no rhyme or reason to what happens to him during the night. The doctor has informed us that this is one of the side effects and there is a name for it, but of course I cant think of it. He is an athlete and in excellent shape, especially for a 14-yr old. But this is our biggest fear between him and I. I am a single mother (although his dad is very involved in his life, he lives with me full time). We start testing about 2 hours before he plans to go to bed and try to get 3 numbers within the same general 20 point range. Our goal is to have him go to sleep between 200-225. We have found that this is our “safe” zone. If he drops too much, there is a little cushion there. We don’t worry so much about him going too high since his numbers are so good the rest of the time. He had a siezure early in the morning when his bg dropped to approximately 4, according to the docs. He was “awake” and had come downstairs. He never actually woke up. His body must have somehow known what was happening. I will never forget that morning, and neither will he. I will never stop worrying about the nights. We are constantly discussing a plan of action for down the road when he and his sister leave the house. She is also very much a part of his care. This is a brutal disease and I sure wish there was more public talk about how it affects literally every aspect of the entire family’s life.

  • Autumn Moses says:

    We do not check during the night unless we have reason to believe something might be night. I check our son (who is almost 6 now) at 8pm when he goes to bed and then again at 10:30. Yes, we’ve missed some lows and he’s woken up, but even though he’s only 6 I try to let him learn how he feels and deal as much as he can on his own (with supervision of course). Someday soon he will want to sleep at a friends house. To on a road trip with friends. Go off to college or serve a 2 year mission for our church. He will want to get married. These things are coming whether I want them to or not. Preparing him for these things starts now. It has to start now.

  • I get up once every night to check, usually around 2 a.m., my son takes an evening dose of Lantus and this is a good time to make sure everything is where it should be. If there are oddities, such as high or low bg at bedtime, I may adjust that time accordingly. I have come to have a sense of where the bg level should be at 2 to know whether to leave it alone or get up again. I prefer to have nighttime bgs a little higher than daytime because we both need sleep and I can pretty much guarantee a 2 a.m. reading of less than 130 is not going to make it to morning without a low. So, I will continue to set my cell-phone alarm and have it under my pillow and do the nighttime check, it is too many hours from 9 p.m. to 8 a.m. not to stop and check.

  • Autumn Moses says:

    Also, for parents who are night owl testers… I am wondering if any of you have looked into getting a service dog for your children? I know we are considering getting one for our son when he’s older. I would feel so much better sending him to scouting activities if I knew there was someone always looking out for him.

    • Parth A. Eubanks-Leach says:

      I would love to get a DAD for my daughter. They are very expensive and time-consuming. You also have to be wary of unscrupulous businesses. There are several that charge thousands for a scent-trained DAD and give you just a dog.

  • My husband has Diabetes and so does my daughter. She was diagnosed at 13 months. Thank God that I am a stay at home mom! I don’t think we slept for the first year. She was just getting off the bottle and still eating baby food so this was a very difficult time for us. I checked her every 2 hours until our doctor was comfortable that she would be okay through the night. Our daughter is now almost 8 years old. I seldom check her at night anymore. Do I feel guilty? No, I don’t think so. I think I feel more worried about her when she goes to school. (thankful that it is now summer vacation) Summer is harder because kids are more active. When I know that she has been very active I usually give her an extra snack before bed if I am worried. Diabetes is scary! Everything about it is. Being a parent and a wife of a Diabetic is terrifying to me. I have woken up with both of them being very low at the same time. We just roll with it. I don’t blame any parent that checks at night. I would never think that is odd to check more than once…even 10 times! I think we would all do anything for our children. It’s our job to protect them from any harm. Of course we can’t protect them from everything but we can try our hardest.

  • Elissa Holder says:

    Economics prevent my daughter from having a CGM. So, I will set an alarm and check during the night. Six years after dx and currently 14 years old, she is accustomed to her new “normal”. However, every night before she goes to bed, she says, “Don’t forget to check me tonight.”

    Why? Because when she was 9 – she lost one of her 16 year old JDRF friends to this awful disease. The one she looked up to was suddenly gone. That is reality and it hurts!

  • My daughter is 15, dx almost 4 years ago at the age of 11. For the first year I never did checks in the middle of the night. Hadn’t even heard of them at that point. Then, 13 months after dx, she had her first seizure caused by a hypo in her sleep that she did not wake to. She has had a total of 4 seizures in 2 years. We have, thankfully, been seizure free for 1 year now! Shortly after her first seizure is when I learned about DIB. I became the most paranoid, non-sleeping, floor pacing parent I’ve ever known! The more I’ve researched DIB, I have learned it’s not just about lows. From the medical research I’ve done – DIB is thought to be caused by a hypo at the same time of a heart arrhythmia – from what I’ve read and can understand – the low blood sugar makes the arrhythmia worse/last longer. It’s not just a low blood sugar that causes DIB. I have also learned from our doctors and research that there is no magic number for a seizure. Haylee has been walking and talking at 26! And blood sugar can drop so fast. How do I know what time to set the alarm for? I can check her at 2am, her be at 100 with no IOB and at 3am she drops low and seizes. For a while I woke up every couple of hours and checked her. I did catch some lows – and some highs. But she’s since been doing great with waking up on her own to the lows. I have guilt on both sides of it. She hates being checked in the middle of the night – though she rolls over and goes right back to sleep. I have buried the what if fear in the back of my mind and try not to guilt myself over checks. I listen to my gut and hers. If her numbers have been wonky that day or that evening, I’ll set an alarm. We don’t do nightly checks anymore though. I do know that many parents do. Especially parents of smaller/younger ones. I don’t think either is right or wrong. You do what you feel is best. That’s why we listen to our gut around here. It rarely fails us.

  • I have two children with T1. One I never had to worry about at night and one I was up for a lot. I agree diabetes varies. There is no right or wrong. I was always amazed at the times something made me wake up, so I would go check my daughter and she would be low, and if she wasn’t I’d go to my son and if he wasn’t I would check my husband, and 9 times out of 10 one of them needed me. Intuition? God stepping in? Who knows. My son is now at college and I try not to worry but it is sure great to get a text or call everyday. My daughter now wakes up for lows at night and right now we are not having many. I totally understand the worry and unfortunately I experienced anxiety and depression for some time. My advice is take care if yourself too!

  • Elissa Holder says:

    An additional comment – For the last 6 years, my daughter has attended a week long non-diabetes overnight camp. She was the first child to attend with Type 1. The director has sought input over the years and learned to provide carb counts in the dining hall and hypo training for the counselors. She has had parents of new campers with Type 1 call me for assurance that it is okay to send them to camp. There is a nurse on duty 24/7. The college age counselors willingly wake the camper up at 2AM for the camper to check their own BG. I can send my child there knowing that she is comfortable with her environment and as safe as possible.

  • Linda Walker says:

    For us we only check in the middle of the night if his numbers have been crazy or if we have made changes to his insulin. My son has always gotten up when he is low on his own but he doesn’t feel it when he is asleep until he hits around 50. I am very thankful that my son feels his lows at night because I am fully aware that not all children do. When reading posts in the T1 groups I am in I hate seeing somebody asking the dreaded question “How often do you check your child at night”. This post always turns into a big deal where if you don’t check you’re a bad parent and if you do check constantly your overprotective. I don’t think people will ever understand that we each do what is right for us. Every single child is different and every single parent is different. We are all in this fight together even if the way we fight it is different.

  • I’m the parent that is hard to freak out. My faith is a big part of that. Also I’m a nurse. My daughter has had diabetes since she was 1 year old. She is almost 9 now. I used to freak out in the beginning and I still have my moments, but her BG is stable at night. I test at midnight(in fact, my body is so used to this schedule, I can never fall asleep until then), and if it is between 100-200, let it ride. I suspend the pump if it’s right at 80-100 or so. I give 15 carbs if it’s below that. She may wake up a little on the high side but easily corrected in the morning. Having this little schedule allows me to get a full nights sleep and she has never crashed at night. Her A1C is fabulous, even with the occasional extreme high of 400+. I’m able to sleep and have peace of mind. I pray often. I know God takes care of her too. 8 years in the battle and going strong. We are in this together.

  • Stephanie A says:

    My daughter (12) has a CGMS that we use primarily for the alarm during the night. I also wake to check her usually once a night as the CGMS is not always accurate or even close! I also often just check to make sure she is moving/ breathing at least once a night. I hate those scary moments right before she moves. I hate the fear. I love my daughter. I can deal with the lack of sleep.
    I also understand that every parent has to find a pattern that is right and comfortable for them. There’s no judging in diabetes!

  • This is making me re-think, what I should be doing. My 12 year old was just diagnosed in January. The endo had me waking up at 3:00 to test his blood and after about 6 weeks of that he told me I didn’t need to do it anymore. Now I am wondering if I should. He quickly went into a honeymoon period and is still in it. When I was checking him at 3:00 he was only slightly low a few times. I really hate the “what ifs” of this disease, and how quickly things can change even if you do everything right! So far so good for us, but after this honeymoon period, and when puberty sets in…I just don’t know, it’s all so scary and I feel like I have to try and figure out everything on my own, based on what works for him.

  • Patti Kasper says:

    I was diagnosed in 1965 and my father was apparently emotionally incapable of dealing with my disease, so my mother carried the burden alone, and because of the era, without the tools that today’s D-mamas and papas take for granted. I can remember when a urine dipstick for sugar was a technological advance. What I never knew until I was 30ish was the dire prophecy the doctors had forecasted for my life back in the day. They told my parents that I would likely would die before I reached adolescence and that if I somehow did survive that long, before I was twenty I would be a brain-dead vegetable. As I have only in this past year discovered the online D community, I have a new-found appreciation for my mom, knowing that she went to bed with those thoughts of “what if” every night for decades. I don’t recall her ever waking me up to pee in a cup during the night (to see what my sugar was 8-hours previous), and if, as I am sure she did, she merely gazed upon me during the night, she has never shared that with me. But I know in high school, during the night odd things would wake me up and I would realize that I was low. Like wrong number phone calls or nightmares or noise outside. I have long believed that was just God doing what He had to do to keep me here about His work a while longer. Hypoglycemia unawareness has made all times of day, but especially nights, just a little scary. Probably because I HAVE found the D community online and am much more aware of what D can and will do to us. But for me, I don’t live in fear either. As long as I can make good choices and can lay my head down at night knowing that I have lived that day well, then its okay. I am not the author of my days, which have already been measured out to me. My actions will determine the quality of those days to a great extent. As did the abuses of my body (my sugar was probably over 400 for at least a decade) as a teen/early adult. I make good choices now, and have for quite a while. One recent choice was to get a diabetic alert dog, and she has saved me, literally, AT LEAST 5 times in the 8 months I’ve had her, both during the night and day. On the other hand, since most of us would rather die in our sleep than say, in a car accident, why did I get her? (JK)

  • Mary Lou Miller says:

    When my daughter was diagnosed 11 years ago, we were mixing insulins, Humalog and NPH. She two seizures back to back within a week of each other; one due to ocean swimming-vacation-wierd hours and the other unexplainable. Two years later, we finally went to the pump. No seizures since. Her numbers are stable at night however if she plays ice hockey or swims, I reduce her basal by 30%. That works for us. When I’m out of town, my husband checks once in the middle of the night. The only time I ever check is if my “gut” tells me I need to which is usually about once a week. You know your child, their schedule, their activities. If something feels like it could go wrong, check. That has worked for us. No guilt. All parents do the best they can every day.

  • My son was diagnosed at a year. He does NOT wake at lows. In the beginning 12 years ago I rarely slept. My anxiety was so high. I became very depressed. Over the years James has become more stable. My husband and I take turns. One of us stays up til midnight and checks. The other is up at 5am to check and if it’s been a very active day we do a 2am check. James is almost 13. I’m already wondering how it will work when he goes to college. Diabetes is definitely a team effort at our house. I’m sure we will find a way to continue that support as he goes out on his own. Thanks for starting this discussion. It’s so helpful to have a place to be honest.

    • Thank you for saying so. I didn’t either until 92 days ago. My husband has had D for 14 years, but now our 6 year old daughter does. Big difference.

  • Lani Eldredge says:

    This brings me back to time of diagnosis, when the endo told us that we would only have to check twice through the night for the first few months. Boy, was that misleading. Six years later and we still test every night. Some nights it may be only once and then of course there are those nights where it is every few hours. I started a support group last year for our type 1 families and that is always one of the questions the “newbies” ask. Everyone handles it differently, but most parents I know do check every night at least once. Tough subject to talk about, especially with new families.

  • As I get up several times at night anyway, I often go see how he is breathing etc. If I get a “feeling” I will test his blood sugar. We have gotten to the point that we check his sugar right before bed and first thing when he wakes. His pump is also set to 130 overnight to avoid a dangerous low.

  • Our teen son has never woken up from a low (or high) but is aware of lows during the daytime. We’ve had multiple middle-of-the-night bg’s in the 30’s over the last 2 years and we rely heavily on the Dexcom alarm. His numbers through the night are unpredictable at times, and steady at other times. If we didn’t have the Dexcom we would check him during the night.
    This is a tough topic for so many of us, but I think we T1 parents come to these decisions with good intentions. Balance in our lives is a very important goal and we seek to achieve it on a day-to-day basis, but let’s face it; this is complicated.

  • My daughter has been on a cgm for two years…one year in Medtronic came out with the mySentry….yes, it was expensive. But being able to sleep at night knowing I have that alarm to wake me up has been priceless. People complain about the needle on the Medtronic cgm inserter…luckily my daughter has never complained. It is about time the cgm manufacturers finally started considering the caregiver…the sleep deprivation is brutal and the technology exists to help parents get some peace of mind. Yes, the cgm is not perfect..but it has always erred on the side of caution for us. I will take the night of false low predictions for every night when her bg is good and I don’t have to wake up to confirm that…..

  • Diabetes is a learning experience that can only be learned by the person who has the disease. I know that is blunt and cruel to every one effected by the disease, but if I continue to tell you that eating that will kill you. I can only respond in 2 ways: 1. I am going to prove you wrong and try it any way. 2. Never try it and wonder.
    I am not perfect and when I was younger I did everything in my power to go above and beyond. My mother (the tyrant) kept sugar away from me as if it was the plague. Yes I tried numerous candies and sweets mainly because that was forbidden. Now that carb counting is the norm it is more acceptable to act in a normal frame of mind. On special occasions extra insulin and sweets are acceptable. Cause and effect. Every action has a reaction.

  • We do get up and how many times depends on the day from bg’s, active, emotions, site changes, to night snack but at some point yes we (and Ii am one of the lucky ones b/c I can say we it’s not just me) have to do a last check @ 11pm and not again till 6am but at this point we might have to decide to let him run a little on the high side so we can do this but often we just take turns b/c so many what if’s and the pump only adds to the what if’s but my son wouldn’t have it any other way but a pump and we wouldn’t ask him to do any different b/c if that makes it just a little easier for him to deal with his T1D we will get up a 100 times if need b, we are a family believe in faith ( higher power/ god) but we also believe we should step on the brakes when needed so we don’t see doing this as questing our faith but more doing what works for us

  • Great Article – after first diagnosis we checked several times through the night – now my son has been on a pump for over a year and initially that was more stressful and we checked more often but now I feel more in control and more able to trust that things are likely to be stable overnight – i check at 11pm or midnight and as long as he is not hypo or hyper with keytones I will make whatever adjustments are needed to get to a number not too low or high for me to be happy to leave overnight and not check again until 6 am – he usually wakes on a really good level – i’m a big fan of basal rate testing (using a period of carb fasting so the only insulin needed is the basal) when pumping because if the basal rate is right you have a good chance of getting carb ratio and correction ratio right too and then things become more stable and hopefully that takes some of the stress and worry away.

  • We rely heavily on our 7 year old daughter’s CGM to alarm and wake us in the middle of the night if she is going low/high. It is not full-proof but we have found that with the Dexcom G4, it is usually extremely accurate for us and with the increased range of the G4, we can keep it right on our nightstand so it is more likely to wake us. The last one to bed will check her (usually around 11-12) and then only if the CGM alarms after that until we are up at 6:30 (and the first thing we do is check her). The CGM has been a god-send to us because we are able to get a decent nights sleep at least some of the time and has eased my anxiety tremendously.

    I think like you said Tom, balance is the key and we have to take our own health into consideration as care-givers too. If we can’t try to be at least somewhat at our best, our ability to manage this difficult disease can get much harder. But every family has to find what works for them and where they can feel most comfortable.

  • Debbie Towns says:

    Hi, I am glad you are having this discussion. We were not told to do night time checks by the doctors. It was only listening to other parents that we realised the importance.
    At our first FFL conference i asked some questions of people with lots of experience and was told that its the prolonged hypos, longer than 4 hours, in the night that cause the dead in bed occurances. I do not know if i am right but i check every 3 to 4 hours now and thats what keeps me happy that i am doing what i need to keep my son safe. I am always tired and sometimes i am sooooo tired i think, i will reset my alarm for 5 hours but then i lay down and start thinking of the ‘what ifs’ and end up getting up and resetting it to the usual 3 to 4 hours.
    However there are those ‘other’ nights where you just have to check more as you are having weird readings or extra activity or something, they are horrible torturous nights. It helps to go on a facebook page of other T1 parents and seeing others who are also awake in the middle of the night, so you dont feel so alone.
    I try to not feel guilty when it all catches up with me and i just have to go to sleep in the daytime.
    I also Home ed my children so after a isturbed night my son can sleep in as he has not school hours to get to! That helps too

  • Barb Peterson says:

    I have been a diabetic for 41 years. My Dr. recently started teaching full time and his replacement said to me “I don’t want you to die from hypoglycemia.” I was really taken aback but he was right. I am asymptomatic. I could be 44 and not feel it. I have a boyfriend who notices EVERYTHING and knows when to have me check – even at night. I would never be able to live alone or I probably would die – not even at night but maybe during the day while taking a nap.

  • This subject is always on my mind, tho I was dx when an adult I did knew a Jr High gal who died in bed yrs ago, she was a flute player in band with me. My heart goes out to all of you with the child with diabetes and nite checking. I set alarm to wake me if I am at 110 or near before bed, I knew of some additional trials for parents of young people. I think this column is wonderful discussions on a dire subject that never goes away. I worked x 34 yrs as med assistant, lab assist and later nite shift ER clerk. Still never knew DIB existed till I was dx. The only thing I can add is to say the amazing coworker who said she would not let me be alone the nite after gallbladder day surgery, coworkers volunteered to change schedules to cover Nikki s shift so she could sleep on my sofa! Totally their idea, and a new acquaintance said Did I ever need some one to stay over her grown daughter would be more than willing! I knew The daughter vaguely and here she offered. I was dumbfounded! I just would willingly done either for another if I had known about DIB all those yrs pre my dx! I wish Ihad known, it would have been able to spell a parent during day for them to sleep some, or fill ing another time even nite hrs as I was working nites I was very used to being up.
    I don’t know how you make this DIB situation to those of us who would really help willingly if only we knew. I realize being insulin dependent from the get go that no one wants to scare the you know what out of all people, but DIB does need tobe talked about outside our homes, and here. Blessings and prayers for all of you.

  • Whenever this debate flares up on Facebook, I wonder if we are asking the wrong question. Rather than asking ‘should you test?’, shouldn’t we be asking ‘Why do we not yet ALL have access to technologies that monitor blood sugars overnight?’. And ‘What can we do to come closer to reliable closed loop systems?’ Imagine what we could achieve if we all put our energy into that campaign, working together …

    • In actuality—it was my hope tah this would not become posts about night time testing—-this is about what have people dine to find the balance tio move forward dealing with diabetes by balancing how night time fears and moving forward are balance. Whether somneone checks 5 times and another once is not what I was hoping here……..it was the mind-set of how one accomplished coming to grips with what was needed and when.

      Thank you.

  • Have any of you ever thought about a diabetic service dog? There could be multiple benefits, especially for when your child is feeling isolated and alone from their diabetes. Just a thought. We have looked into it, but have not done it yet…

  • We check our 2 girls in the middle of the night most nights. But if the CGM’s sensor have been right on we’ll rely on Mysentry and dexcom G4 to wake us. That doesnt happen all the time, but sure is nice when it does. My second blog post ever dealt with dead in bed syndrom. Amazing some of the BG’a we find in the middle of the night, scary lows and wth highs. Good post Tom.

  • We check when we have an insulin change, illness, or a ‘wacky’ period. My husband and I take turns–one night me, next night him, and so on. I sort of think of it the same way as when our boy was a baby and woke for feedings and diaper changes. We took turns then–so we take turns now.
    Every time I creep into his room for a night check–first thing I do is put my hand on his chest to make sure he is breathing. Every night before I go to sleep, I pray for all of us–living and dealing with diabetes, I pray for strength and a cure–but most of all I pray that we let our boy try all things, be all things–despite our worries and fears.

  • I also have 2 daughters with type 1. I checked them every night for 14 years (the older one was diagnosed at 4, now almost 19). I stopped. Why? She’s going to college in a couple of months. I’m not going to be there. We were on vacation together all week last week. One night she mistook her homolog for her lantus. Took about 30 units of novalog at bedtime! She didn’t realize it until she went low in the night…sharing a bed with her sister! Fumbled around for juice and candy, ate and never got out of bed. High the next morning, and all day…because she never gave her lantus. She felt horrible! Lesson learned…I hope. But scary things happen. I know people who do everything TEXT BOOK perfect and this still happens to. So you just do your best and pray.

  • Yes, Tough Topic, but I appreciate other’s thoughts. My eldest is 14, dxd. at 4. (I’m a single mom to 3 great kids, so it’s all on me). He’s had 8 seizure episodes since diagnosis, but only one since being on an insulin pump (7 years now). He is often unaware of when he’s low. He was walking around like “normal” when his bg meter read 19. It’s so cool to read others’ posts about trusting God to help us take care of our kids when we are just so darn tired…there have been numerous times when I’ve woken up for no apparent reason and gone to check him, found him at 20, 30, 40. For me there is a definite level of faith and trust involved, or anxiety would just be my undoing. I’m so grateful. I had never heard of Dead In Bed until 2-3 years ago–honestly, the blue candles on Facebook were a shock, and I had extreme anxiety about him, after learning of DIB. I’ve always checked before bed, and-if he was below 115, OR if he needed a correction, would check 25 and 45 minutes after the snack/extra insulin, respectively. Sometimes of course this meant waking up every hour, changing out a site/cartridge, etc…sleepless night. But the vast majority of nights, If he was fine before bed, I’d sleep through, or set alarm and check him once around 3am. Learning of DIB scared me. I started checking every 1-2 hours for about a year. His bedroom door stays open of course, and my room is close. I talked to his Endo team about DIB and they urged me not to worry about it. I was able to get him a CGMS which vibrates in an empty drinking glass on his nightstand and wakes me up–this is the first time I’ve had any peace of mind to sleep soundly through the night. There were many mornings that in spite of losing sleep, he’d drop so low I couldn’t wake him for school. Not since he’s been on the CGMS, though–the Dexcom is a godsend and I wish every parent of a Type 1 could have one. So, for me, as for all of us, it’s finding my own balance that works for me–in this case, a little technology (pump and CGMS), a lot of trust, sticking to workable routine, and jettisoning anxiety about “what-ifs” as much as I can, so we can embrace life as much as possible!

  • OK, this is honestly not what I wanted to read, as I have just let my type 1 child go off on her first sleep over ever, and she was in tears before going trying to decide if she was ready or not. She has her cell, her meter her juice, her snacks, and she will test and call me with the numbers. The Dad has my number, I have his. Am I a wreck, kind of, but SHE told me this time, to put it in God’s hands. That is what I need to do sometimes. At home we usually test before bed time, hers, before bed time, mine, and if her Dad is up later, he tests before bed too. Other times we use the sensor, which does have a low alarm. I kind of wish it was on her tonight, but God has this tonight.

  • I rarely check my son during the night anymore. When he was small (dx at 5) we took turns checking him in the middle of the night. Now we only check him if he is ill, has been unusually active, or had very strange readings through out the day. He knows the risks but he prefers to handle his diabetes himself and we have learned to work with him. He will be graduating from high school next week and leaving home before we know it. All we can do now is hope. There is no magic formula, if there was we would all be sharing it.

  • Carrie Blasi says:

    This used to be a conflict between my husband and I because we both do it differently…I have decided not to voice my opinion with him because I know he has to do this to satisfy his fears…but when I check, I check at midnight and at 3am AND if her 3am number is 150..ish, I don’t check until the morning (and I will add that if she requires an insulin dose due to her number being too high, I wilk dose her what the pump says to dose)…my husband checks her every 2 hrs at night – but when she requires insulin, my husband does not follow what the pump says to dose…he always goes lower and then ends up chasing the number all night…UGGG!!!! I know this is hard for him, and I am thankful Emma sleeps through it all…but I wish he would relax a bit on the checking at night…

  • You have definitely sparked conversation! This disease affects each child differently and the child’s age seems to be a factor in what needs to be done to monitor well. Parents know their children and generally do the right thing. My heart goes out to those with really young T1s. Some parents put their heads in the sand, do not want any advice ( which is their right) and hope for the best …and that drives me crazy, but I have enough to worry about so I try to ignore….
    We check at night. My husband stays up late and I get up early and we have a CGM to use as necessary. It works for us without making us sleep deprived crazy people (lol) MOST of the time. I fear the night as much as most t1 parents, but we have found a balance… finally. Hang in there fellow t1 parents. It’s tough.

  • We have not done night checks for over 2 years when he was first diagnosed unless there is just something weird happening or he is sick. I wholly agree with the balance part of it . The 2 times he did go low he woke right up and knew what was happening. The times I have checked he is miserable the next day because he has hard time going back to sleep. I have to live with my decisions and I’m not a bad parent for not checking 4 and 5 times a night and put him through that if there hasn’t been a need to so far. If things change they change but for now I will keep things as they are. Checking it over and over isn’t conducive to his quality of life and is not needed *knock on wood* for now.

  • As with anything in our lives (my families life) we chose to not let the fear control us but for us to just live. As her parents we have to be conscious of everything but live as if it’s not going to happen. There are lots of real dangers in the world but if fear controls how I live then I miss out on life. I don’t want her to grow up (she is 9) living in fear of the disease but to focus on what she can accomplish with the disease with proper care. To be driven by fear is to live in defeat to me. For me it is a mind set. Although I check her often, for me it’s not out of fear but I am trying to keep her numbers as controlled as possible while I can. Each person is different but this is it for me. Sometimes I need to meditate and repeat it as a mantra if fear begins to dominate.

  • I have consistent middle of the night waking due to insomnia. If I wake up. I check her. This is virtually EVERY night. (but yes, there are the occasional surprise nights that I awaken in the morning to realize I slept all night) Since my husband also has diabetes (LADA) he sometimes has lows in the middle of the night. They wake him up. I certainly don’t get up to check him 5 times a night.

    Our daughter also wears a Dexcom, and that makes me feel much better. It’s reasonably accurate, and I feel like between my own natural waking from insomnia, and the Dexcom, we’re pretty likely to catch a low. Also, she does feel her lows. She had a bad night not long ago though, where she slept through a stubborn 55. (She’d been swimming) Oh! and that’s another thing, if I have reason to believe the numbers could be wacky, I’ll check her more.

    It’s kind of an intuition/experience thing. How much I check her varies, but I do depend on the Dexcom to wake me up. It sits next to her baby monitor, and I can even hear it when it vibrates. I’m a light enough sleeper, it’ll wake me.

  • It is nice to read what other parents do. Our system like many of yours is what works best for our family. My 12 year old daughter was recently diagnosed with T1, and like many of you those first few weeks and months we were up in the middle of the night checking often. However what we found is that my husband and myself are not being the best parents we can to all of our children if we are up multiple times during the night as well as up all day. We needed to find a balance that worked for us. Now we look over the days numbers and activities, if there are things that happen out of the norm we will do extra checks over night. On the other hand if everything was fairly normal for the day and the evening went well we don’t get up to check. She has found that the pens work the best for her, so if there has been a fairly active day we decrease her units and give her a substantial snack before bedtime.
    There are many horrible things that can happen every day to us or our children, and we can’t plan for them all, but we also can’t live our lives in fear of all the what ifs. This doesn’t mean we are ignoring the facts, we take precautions and do what we can. We are not perfect and neither is diabetes.

  • Jerri Lynn Warburton says:

    My daughter is 14. She was DX a month after her 11th birthday, a little over 3 years ago. When she was DX they told us to do a 3AM check each night to make sure she did not drop. They called this “pre dawn syndrome”. They gave us a time limit of how long to do this (I can’t remember now, a week or two maybe), after that time limit we no longer did the middle of the night checks. My daughter has always been sensitive to lows. If her blood sugar is 80 she has a snack because she is uncomfortable. She has been woken up by lows in the middle of the night (more so when she was on the pump). She complains that diabetes does not allow her to sleep. With that all being said, this is the first time I have ever heard of Dead in Bed syndrome and it fills my soul with fear. I cannot allow fear to control my life, and I cannot allow it to control my daughter’s. We will continue to test 7 to 8 times a day. We *do* do a 3AM test if we make changes to her doses, but only then. Since my daughter’s DX she has never been low enough that she could not drink juice (and she has hit 30’s). I thank God (and knock on wood) for that. For *us* it is about not letting the diabetes be in control. It is making diabetes play second fiddle to my daughter and not the other way around. Do I lay in bed awake and worry? All the time. Do I have my moments where I break down and cry? All the time. But I pull myself up, brush myself off, and I tell diabetes to stick it where the sun don’t shine!

    • Parth A. Leach says:

      It has been 8+ years since my daugter’s diagnosis at the age of 3. I get up 2-3 times a night to check her BG. I used to insist on doing his EVERY NIGHT…I would not allow anyone else to do it. A few years ago my husband decided that he would take “timer duty,” as we call it, on the weekends so that I could get some uninterrupted sleep. At first I used to wake up with every chirp of the timer…I couldn’t go back to sleep without knowing what her BG was. Within the last year, I can finally allow myself to sleep straight through on the weekends. It’s awesome! My daughter does not wake up when she’s low…she was 44 last week at 3am. She does not wake up for BG checks. I will check in the overnight hours as long as I need to to be sure that she is still alive.

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