41 Responses

  1. Cari
    Cari July 20, 2013 at 2:56 pm | | Reply

    I was diagnosed at 8 years old with Type 1 diabetes. It was hard at first to understand the changes that would come. I am so grateful to my mother for being so patient and understanding. I remember going through some periods of anger and rebellion, but she never gave up on me. She was amazing. I remember missing the bus practically every day because I had the hardest time waking up if my blood sugar was low. My mother would wake me up and practically pour juice in my mouth and wait patiently until I snapped out of the low. Then she would walk me to school. 😊😊

  2. Vicki
    Vicki July 20, 2013 at 3:08 pm | | Reply

    Great post Wil. CGMS has been a game changer. As a long term IDDM CGMS has proved that I have a lot of lows missed during the night.

  3. justjenny
    justjenny July 20, 2013 at 7:28 pm | | Reply

    You have no idea. You have no idea what it is like to be the parent of a two year old who has type 1 diabetes. You have no idea what it is like to have your child have a seizure during the night at the age of 4. I check my daughter’s blood sugar at night because diabetes doesn’t sleep and it doesn’t go on auto-pilot between the hours of 8pm and 7am. Perhaps it was more acceptable to have blood sugars at higher levels during the night back when the op and the author were young so it wasn’t as much of a worry. Maybe we worry a lot more about long term complications and try to keep tighter control and a lower A1C than you did or your parents did. You almost make it sound as if parents should say, “so what if we have meters to check and manage BG better? Whatever will be will be!” I am trying to keep my daughter as healthy as possible, that’s why! My daughter is 12 now, and she has already lived with diabetes and its effects for ten years. During those ten years she has moved from us administering all care to taking on more and more responsibilty. She does her own site changes, pump maintenance, and glucose checks now at home and at school. I don’t think it is too much to ask of me to do my part and check her during the night. Parents of kids with type 1 feel so much angst over whether or not we are doing the right things when it comes to this added parenting responsibilty. Thanks for adding more criticism to how we choose to do it. And by the way, do you know where I learned about the importance of checking during the night? From the folks who organized the Children with Diabetes organization. I am grateful every day for the real and practical advice and opinions I hear there because these are people who have experienced life as I know it, as the parent of a T1.

  4. Joanne
    Joanne July 20, 2013 at 7:52 pm | | Reply

    Why do we do it? For me, it’s simple; because I can. I have the tools, why not use them?

    I have seen too many unexplained 32s in the middle of the night. I can give her the same snack, at the same time and put her to be at relatively the same number and her BG can vary widely at the middle-of-the-night check.

    I’ve also come into her room around midnight to check and found her pump had fallen off. She sleeps until 8:30. So that would have been over 8 hours with no insulin. We’ve never had DKA and I hope we never do.

    Just last night I had to give her 3 shots and do a pump change. She cruised in the 400s almost all night, no matter how much insulin I gave her. Again, for no reason. It was a situation that needed to be monitored, so I did… And only got about 2 hours of sleep.

    I would not go 10 hours without checking my daughter’s BG during the day, but that’s exactly what I’d be doing without night checks… They help me to keep her BG in a safe range so I can minimize any complications that could happen. She was diagnosed very young and will have to live with diabetes a long time. Anything I can do to keep her safe, I will.

    It’s a personal choice and I believe that most parents will do what’s best for them and their kids. For me, I choose to err on the side of caution.

    Does that make me a helicopter parent? I don’t think so. I think it just makes me a Mom.

  5. kelly
    kelly July 21, 2013 at 4:06 am | | Reply

    I totally agree that todays management of numbers is overkill, and I wonder often what “damage” may be done to our kids outlook on their disease in the future. Testing 8 and more times a day? CGMS being forced onto our kids? Its exhausting, yet we play by these same rules in our house, because we have to. We never miss night time checks, and I am the mom that probably does “too much” for my child with Diabetes, but its because the expectations of maintaining an A1c under 7 requires me to put in this same extreme effort hour by hour every day, unfortunetly. Overkill? Totally. But….what other choice do we have when dealing with new technology of insulin pumps, carb counting and high expectations of acceptable blood sugars?

  6. Tammy
    Tammy July 21, 2013 at 5:39 am | | Reply

    “I guess it only looks like overkill until it’s your kid.”

    That’s exactly right.

    As a parent of a teen CWD, I get judgement from all sides. The endo/CDE who believe the technology should keep BGs completely stable, or we’ve somehow failed to master using it. Other D parents, especially those whose children are now adults, who think our individual experiences should mirror theirs. Others who have limited or no knowledge of D, yet believe we make managing much harder than it has to be. Anyone & everyone seems to think they have the knowledge & right to judge my decisions.

    No one knows the ins & outs of D in my child better than I do. I am the expert on my CWD.

    Does that make me a helicopter parent? Absolutely not. I had sleepless nights with my daughter who suffered severe asthma attacks, & plenty more with the one who suffered from IBS. I don’t hover over my CWD anymore than my 2 adult daughters. In some ways I actually hover less, because allowing her the opportunity to practice her independence in self-care now, while I can be her safety net, is much more important.

    We do overnight checks, even with the CGM. I do worry about overnight lows, but I also don’t want to miss the opportunity to correct a high that would otherwise go unnoticed until morning, & cause her to spend the entire day feeling the side effects & battling to get back in range. Some day (I hope) the hormones will settle down, & her D will become more predictable. For now, I do what I can.

  7. Mary Dexter
    Mary Dexter July 21, 2013 at 9:19 am | | Reply

    I’m a mom who was accused of helicoptering my non-diabetic daughter. I have LADA.

    Those who accused me of hovering were teachers who liked to tease uncool kids because it made the teacher “cool” and self-centered parents who had no time for their own children except as extensions of themselves. My daughter has grown up to be a responsible caring adult. At times, she took care of me.

    My husband sleeps better now I have the Dexcom G4, but still wakes me when the alarm goes off and says “Test. Fix.” and won’t let me go back to sleep until I do. I no longer trust the pump to deliver the amount of insulin it says, but at least I learned by testing often rather than waking up in a hospital. The machines aren’t perfect yet.

  8. Lin
    Lin July 21, 2013 at 8:40 pm | | Reply

    I liked your article and thought it was well balanced and well written, despite getting into a touchy subject I know. I do NOT envy my parents for what they had to go through despite the fact that they really didn’t do much. It still was harder on my dad than it ever was on me, I think. He never accepted it and every week he talked about a new cure I should try. I was pretty much on my own caring for it save for the occasional midnight BG check by dad when I was talking in my sleep, weekly “grade” check (average under 180 if you don’t want to get yelled at), and “blame the child” sessions from them at the endo. Although I wasn’t 4, I was 11, so self responsibility was reasonable to an extent, I just lacked the support. It was more of a hands-off parenting approach. Opposite end of the spectrum, very different but harmful outcome at one point in time. But we all grow, and chose our own paths despite our parents “mistakes.” Heck, we even learn a whole lot more from them that way, I think. I hope your teen patient finds his way without learning the too too hard way. That’s a rough one.

  9. Katrina
    Katrina July 21, 2013 at 10:07 pm | | Reply

    You touched on the many factors influencing the changes in diabetes management over the years, but you really missed the boat by saying, “the new D-parenting style has created a generation of ‘spoiled brats.’” You said, “to manage type 1, you really need to own it.” Tell me how a 3-year-old with diabetes can “own it” and somehow take the responsibility of blood checks, carb counting, insulin dosage, etc. Remember each family with diabetes is doing the best they can to stay healthy without feeling beat down by the routine obligations of diabetes care, and each parent takes seriously the transition of responsibility over to the child when the time is right. (I imagine this to be a gradual process for my 5 year old, diagnosed at 3). My 5 year old now does his daytime checks when I prompt him but obviously can’t wake himself to do night checks, like the one last night when he was 57. He sleeps so soundly that he even sleeps as he chews the crackers I shove in his mouth and has never woken on his own from feeling low. To imply that this type of care and diligence is turning our kids into brats is insulting.

  10. Christina
    Christina July 23, 2013 at 9:13 pm | | Reply

    You started out good – I mean who doesn’t want a cheer leader – “Go D-Parents! We love recognizing the near-superhero powers of parents who so bravely take on the role of manual pancreas along with the rest of their parenting responsibilities. ”
    It went down hill from there. Let me start by saying I pray you will never ever know!
    My youngest with T1 was dxd at age 2. Insurance wouldn’t approve a pump for over 6 months. We spent the first 4 months using Lantus – we reduced the amount repeatedly but every night my son would be in the 40′s by 2am despite high fat/carb snacks before bed. EVERY NITE. He wouldn’t wake up from the lows. When I would find him and put a juice box straw to his tiny lips he would gulp it down in his sleep. I would stay up – Id check 30 minutes later still in the 60s, more juice. In the morning he knew nothing of it. We switched to Levimir at 4months – the lows at night lessoned but did not go away. 6 months of non-stop nighttime lows unless I fed him huge amounts of carbs before bed and even then there was no guarantee – no promise he’d be safe.
    Pumping helped but depending on his numbers at bedtime I would still get up about 3 times a week. Just to check – maybe it was a big correction before bed, maybe it was an ideal number before bed but wait he played soccer for 3 hours – when will that drop him. 2 years later my second child is diagnosed – same thing lows at night while on lantus. We got the pump earlier for her. it helped – combo bolusing for corrections meant less of a steep decline – more sleep for me. Still guess how many nights out of 7 I had two kids with good numbers and no extras to consider.
    Its been over 7 years for my son, over 5 for my daughter. They are great at managing their own diabetes as well as site changes, pump maintenance, being responsible in general – off to friends homes, amusement parks, just being independent normal kids. At night I take over when they are fast asleep. Kids brains need sleep to develop. My kids will have their entire adult lives to deal with diabetes at night – if I can do anything for them right now it is to do the D and night. Ive talked previously with my daughter about when she will take over her own nighttime care – likely around 16. We don’t have CGMs – insurance wont approve them and providing 2 kids with CGMs is outside our available means. We hope the FDA approves a certain CGM for kids under 17 soon and our insurance will then play nice. We have tried them via a study and they are wonderful devices and I did get the best sleep ever in that week. I know what sleep deprivation is doing to me and what continued sleep deprivation will do. I can sleep when they are grown. When they are wearing CGMs.
    It isn’t right what you suggest about spoiled kids. My kids do more, are more than most other kids I know (those without D). They are stronger, braver and smarter than their peers. They keep themselves alive daily – how dare someone suggest they are spoiled.
    Perhaps this is unfair of me – a person who doesn’t sleep 25 feet from their own child and have to wonder if their goodnight kiss truly was a kiss goodbye might never truly understand what it means to love a child with diabetes.

  11. Katie
    Katie July 24, 2013 at 10:09 am | | Reply

    My son was diagnosed at age 1. I didn’t sleep much for most of the first 3 years, because he was SO insulin sensitive and SO carb sensitive and SO temperamental (which was an inborn trait, lucky me!). At that time, before the advent of CGMS (and which our insurance STILL will not pay for, because his numbers are TOO good — oy!), testing multiple times during the night was the only way to know what the heck was going on. It also gave me the benefit of learning a great deal about my son’s diabetes, and how insulin, food, activity, illness, and growth interacted with one another. We have been lucky that he has never seized, though we have seen some VERY low lows overnight from time to time — but generally, they don’t just show up out of the blue.

    5.5 years later, he generally gets tested 1x overnight, unless we have been seeing funky numbers, he’s sick, or it’s been a VERY active day. The pace of checking every 2-3 hours overnight has not been sustainable. I went through a BAD period of D management burnout around the time my daughter was born 2 years ago, and I realized I had to change my thinking, or the whole family would suffer from my lack of sleep. Also, now that my son is older, he has become more sensitive to both highs and lows, and will generally wake and come get me, or at the very least call out (I am a SUPER-light sleeper).

    Don’t get me wrong — there are times when we have to stay up and do the additional testing and watching and waiting — but for the most part, it is okay for us (and I’m only speaking for myself here) to let some of that overnight testing go. We’re happier and healthier, I think, for not letting D completely take over family life…..and my son is doing great — A1Cs between 7 and 7.5, which is terrific for a 6 year old. Could we get that A1C down below 7? Perhaps yes, perhaps no, but as I had to learn the hard way, diabetes never behaves perfectly, even when you work your tush off to get results.

  12. Jessica Perez
    Jessica Perez July 24, 2013 at 11:19 am | | Reply

    Spoken like a true TYPE 1 Adult who has no idea what it is like to be a parent of a child with Type 1! You really suck. Sorry but its the truth.

  13. Louise Deane
    Louise Deane July 24, 2013 at 11:51 am | | Reply

    Wow – I am amazed at the strong reactions of a lot of parents to this blog. Don’t forget the guy who wrote it – could be the grown up version of YOUR child in 25 years time!!! Please don’t get so angry with him. It is observational and he lives this disease himself 24/7. My daughter was dx at 10 and is now 13. She was older – but I can understand to some extent the worry of having a baby or toddler dx with type 1 – must be the hardest, scariest thing ever!!! We need to deal with our feelings, our fears, our hang-ups – our hopes and dreams for our children ourselves. They will leave our homes and be responsible adults STILL living with their type 1. We will always be their parents – we will always worry. OF COURSE – we need to take care of them the best and safest way we know how. That’s obvious. We also need to know that we have to grow and change with them and we need to accept when its time to step back (and we will know). Please don’t get so angry – its makes me feel so uncomfortable. Direct those feelings to contributing any way we can to finding the elusive cure – OR to raising happy kids – regardless of their path in life. May it be a happy one…………..

  14. Mom of 7yr old type 1
    Mom of 7yr old type 1 July 24, 2013 at 12:19 pm | | Reply

    Wow! I do not agree at all. I just read a medical study just last night which stated the dangers of the new A1C requirements which parents are URGED to accomplish. Lower BG levels must be had to lower long term complications. This is relatively new. This was not the case so many years ago. It goes on to state how this is extremely dangerous for our kids as no one really knows the long term implications of numerous hypoglycemic episodes. Approx. 50% of kids do experience hypogylcemia during the night and the body does not adapt as well as during the day. Hormones regulating this are not the same. Frequent low blood sugars will deplete the glucagon stores in the liver causing greater risk for our children. If you don’t have a child, don’t get on the soap box. Base your comments on science, experience with a child who is battling this disease, not opinion based on what you witness from someone else’s child. Just like the nature of this disease it is invisible, you don’t know what goes on at home, you don’t see the care that person does or does not take or the level of care necessary to keep their child alive.

  15. Anonymous
    Anonymous July 24, 2013 at 12:31 pm | | Reply

    My daughter, now 8, was diagnosed at 18 months…so we’ve been checking her blood sugars at midnight and 3a.m for 6 years now. We’ve been doing it for all the reasons you suggested and your other commenters mentioned. And we’ve NEVER gotten her A1c below 8. Diabetes sucks! What I think would be more helpful than calling T3′s names would be to come up with suggestions for how their kids can “Own their diabetes.” I very much want my daughter to treat her diabetes as seriously her dad and I do…but I’m not getting any guidance on how to get her there.

  16. Julie
    Julie July 24, 2013 at 1:14 pm | | Reply

    Since your on a roll lets blame the endos for forcing new changes. My son was dx at the age of 4 and spent a week in NICU because he was in DKA when dx. They medivaced him to a better hospital and when I got there he was in respiratory distress and his kidneys shut down. Started off with syringes and vials and my child was testing his sugar on his own before we came home. I made him own the day time checks because i needed him to get over that fear. Things were ok. Then the prefilled pens became an option. By the age of 6 my child was dialing in how many units on the pen and self injecting after we totalled his carb intake together. Fast forward to age 8. A1c was 7.8 I was fine with that. Then I was told that all kids needed the pump because it gave better control. Eff that his a1c has been high ever since. Constant changes more testing and yes I test him at 2 am. Hes now 11 they want him to have a cgm so we can correct lows sooner and guess what insurance refuses to cover it. We’ve asked to go back to shots and have been told no. I thought the pump was supposed to be safer and provide better control and its a joke. My child has had 2 sezuires in 3 years because of highs. And changes are made three times a week. Everyones diabetes acts differently and my child has never been text book. Just my opinion like you are entitled to yours. Just remember there are two sides of the coin

    1. justjenny
      justjenny July 28, 2013 at 10:23 am | | Reply

      It might not be the pump, but his age. Puberty wreaks havoc, and all bets are off! Hang in there.

  17. Cathy
    Cathy July 24, 2013 at 2:15 pm | | Reply

    How dare you make light of parents who are sleep deprived over getting up and checking their kids during the night. My son’s worst Highs and Lows have been in the middle of night. Do you think I WANT to set my alarm at 2am? His CGM has helped – which means I am still getting up to correct a High or Low.

    …I guess it only looks like overkill until it’s your kid… I guess :(

    …She’s probably forgotten how to be a person. Her role, her identity, and her purpose, is about to be stripped from her. The whole thing could end badly. – WTH??? Shameful

  18. michelle
    michelle July 24, 2013 at 2:48 pm | | Reply

    Ignorance really is bliss. When we first started out, 4 bg checks a day were all we were “required” do to. 4. I can’t even imagine. Adn those 4 were always pretty darn good. And then we learned that diabetes didn’t take time off during the 12 hours a night my young child was sleeping, nor did it take time off during the day when the NPH was peaking and we had to force him to eat. As he grew, and hormones grew, and technology became better we were astounded to learn what highs and lows we had been missing. Horrified. But it’s far easier to bury your head in the sand and pretend that nothing bad will happen and berate others for being too in control. Whatever. Ignorance is bliss.

    In the past few years there have been numerous studies which show that a family approach to diabetes care, one in which the child is NOT asked to own his diabetes until much later, where parents stay very involved, is the best way to ensure a good outcome, to ensure that the teen rebel years aren’t horrible and that the teen moves into adulthood knowing how to care for diabetes. Not feeling like diabetes is a burden that he’s had all his life. Parent after parent who I’ve spoken with who have navigated the teen years in a positive fashion have all told me the same. I don’t want to hear from parents who failed the teen years, I want to talk to the successful ones.

    But ignorance is bliss.

    (oh, have slept more in the past few months with the G4 than I have in the past 8 years. )

  19. Jamie Perez
    Jamie Perez July 24, 2013 at 5:12 pm | | Reply

    These are two very good articles supporting night-time checks for T1 children AND adults who do not have a CGM. One of them is from DMine’s very own, AllisonN. She did a great job.

  20. Robin Hubbard
    Robin Hubbard July 25, 2013 at 5:40 am | | Reply

    Our daughter was 5 when she was diagnosed in 2008. Within 6 months she was using a pump and CGM 24 hours a day, seven days a week. We started using the CGM because she had no recognition of her lows at all and would often drop to her feet as we were walking along. These were some of the scariest times of our lives. I can’t imagine saying “no thank you” when the CGM was offered.

    Because she wore the CGM 24/7 we quickly realized that the nighttime held all kinds of uncertainty. I can not begin to tell you how many times the CGM has kept our daughter out of the hospital except that it is far too many times to count. This technology is the reason we check through the night and I am thankful that we have it…I am thankful that I still have my daughter. I am not making more of this disease than what it really is. I am just equipped with more technology than you were when you were young.

    As to your feelings on these children being spoiled..I can’t think of a more ignorant thing to say. At 5, my daughter was doing her own finger sticks and at times even giving herself her own shots. At 11 she does it all…infusion set changes, when she takes pump breaks she doses and injects her own insulin, counts carbs/boluses without supervision, carries all of her supplies with her wherever she goes…and she does all of her homework, plays sports and lives like any other 11 year old kid..with a sense of humor. We work hard to make her life normal despite the diagnosis of a chronic condition. Just because we are fortunate enough to have the technology to care for her better than what was available to you how does that make her generation spoiled? If anything, they are more responsible. But that was not your generations fault and I do not call your generation irresponsible. Times are just different.

    My daughter takes it ALL on during the day, with a kind school nurse, a wonderful endocrine team and caring parents as support and most importantly, as TEACHERS to her on how to develop age appropriate skills to manage HER disease. Nonetheless, she is only 11 and a growing child that needs sleep to develop. We choose to manage this disease for her at night so she can be up to the task of managing it all day long and still be a kid. As she ages, we fully expect night time checks to be part of her diabetes training. But for now, we have seen first hand that it is a necessity to check her sugar most nights, on days when she has played 2 hours of ice hockey or 2 hours of lacrosse or run in a cross country meet or just had one of those non-diabetic friendly wonderful kid sweet snacks before bed that cause her sugar to go through the roof. I don’t choose for her sugars to react through the night,…they do. I don’t LOVE getting up to check her sugar at night but I do because I know what the night time holds for her, as I am blesses/cursed with a CGM. Her diabetes may not be like yours or anyone else’s. I can not speak for any other diabetic but MY diabetic child is, for the very most part, UNSAFE if I do not treat/correct through the night.

    I brought this child into the world, for better or for worse. It is my responsibility to care for her through it all, even if that means night time checks and training her to do the same when it is age appropriate. I will do right by her because I chose to have her. I chose to bring her into this world. More than anything, I love her and hope to see her live a long healthy life.

  21. Robin Hubbard
    Robin Hubbard July 25, 2013 at 7:16 am | | Reply

    I’m sorry…I rarely post comments at all anywhere, let alone twice…but I have a question for you…

    You mention that “your kind” did not have glucometers. If they had been available what do you think your parents would have done? Would they have obtained one for you? Would you have been a spoiled brat for testing your own sugar 6-8 times a day or would you have considered yourself responsible?

    If CGMs had been available and you did not detect your lows, would your parent have gotten one? Do you think other parents of your generation would have used them if they were available?

    Comments like “spolied brats”, “overkill parents” fall into the same trap as when we try to dissassociate ourselves from Type 2 diabetes. It serves no purpose except to bash our own. None of us asked for this disease. Posting negative comments only makes all of us look bad and feeds into the sterotype that we all somehow deserve this.

    Please consider this the next time you create a post. You are in a position to create awareness via your online posts. Negative comments such as these serve no positive purpose to our community.

  22. Robin Hubbard
    Robin Hubbard July 25, 2013 at 7:49 am | | Reply

    ok, third post…you truly got to me.

    Another question..does this mother/son “train-wreck” know that you are discussing them in an on-line community? How much good are you really doing for them by airing their laundry? There are certainly more constructive ways to help them.

  23. Melissa
    Melissa July 25, 2013 at 10:17 am | | Reply

    I fall in that middle ground. I see the point of the article and at times wonder if I do too much for my now 14 year old. Is he capable? Hell yes. Does he remember all the time? Hell no. Overnight I do actually trust the CGM – love the new Dexcom G4; huge improvement there! Daytime, sometimes I let him fail slightly – he will not test or bolus and well he will feel like crap. Hmmm…… help him learn a lesson I hope? Probably more than me ragging on him all the time. Do I think he needs to step up the responsibility more? Yes I do but I think that he will too. He isn’t a spoiled brat but is spoiled in that I do much of the research but then sit and talk with him about things and take his say into consideration. Do I trust him 100% without me? No but there is Diabetes camp (where he is now) and thankfully my mom is great about checking him overnight when it is needed. It’s not a nightly thing for us. Even though we did once have a seizure from an undetected low that caused some temporary paralysis – right after our first trial with the old dexcom ended. We figured out what probably happened with that and moved on from it. Added it to our knowledge.

    Having said all that – each person who has this damn disease has things that work and don’t work for them. What works well for my son may not work well for the next person. I get that and totally respect that each person and family needs to deal with it how they feel best.

  24. Julie
    Julie July 25, 2013 at 4:32 pm | | Reply

    Wil – you really stepped in it this time. Normally your posts are insightful but this time you missed the mark by resorting to name calling and belittling. What ever side of the fence DMoms are on – to check or not check in the middle of the night is our choice. Either way, I highly doubt a 2am finger prick raises the brat factor. We are all in this together my friend, day and night.

  25. katy
    katy July 26, 2013 at 10:54 pm | | Reply

    I think the big difference is that we (D-parents now) have the tools to keep our kids’ blood glucose closer to normal, while D-parents in Olden Tymes didn’t. And how can we not use the tools, if they’re available? It’s barely a choice.

    Also, we (D-parents now) have Netflix and can binge-watch Orange is the New Black, House of Cards, Downton Abbey, and the like; D-parents then had…local news?

  26. Reyna
    Reyna July 27, 2013 at 4:52 am | | Reply

    Hi Wil,

    Thank you for tackling a very “touchy” subject.

    My approach to Joe’s management isn’t just checking once in the middle of the night for only lows…but also checking for highs. The night time hours can be 8 to 10 hours (a huge chunk of the day) where blood glucose trends can be identified and then remedied accordingly. Highs can be detected and corrected. Lows can be found and treated. I am not talking about every 2 hour checks throughout the night. I am talking about a check prior to my husband’s bedtime at 11pm and a 3am check by my husband or by me.

    I actually am going to be bold here and state that people should check their children at night. It is the longest string of hours in the day without eating and activity. It is more than a third of your A1C.

    And…onto the independence issue. I find it hard to balance what all the experts “recommend”. Here you are saying we are over-kill, but I believe it is Dr. Ponder stating we should stay involved. I am constantly trying to balance Joe’s care of himself with my involvement. It is difficult at best.

    Again, thank you for taking on this subject.


  27. Meri
    Meri July 27, 2013 at 12:50 pm | | Reply

    The more I think about this, (and yeah, I’ve thought a lot about this,) I think the bottom line is Tom’s parents were awesome parents.

    He grew up thinking that diabetes was no big deal. Thinking he was safe, and all was well.

    All hallmarks for good D’rents. Everything that a good D’rent endeavors to do…protect our children.

    But I guarantee, GUARANTEE, his parents worried and thought way more about his diabetes than he thinks. If his parents are still around, and he can ask, and they say they rarely worried, it is because they have blocked it all out.

    I get it. I’ve done it too.

    Also, we have more information now. We wear bike helmets, seat belts, we’re wary of lead paint…and we know that better A1C’s with less swinging blood sugars lead to less complications down the road. These days we may be given too much information, but it is information nonetheless, and as good parents it is our job to act on it.

  28. MommaKat (@MommaKat)
    MommaKat (@MommaKat) July 27, 2013 at 5:44 pm | | Reply

    Wil, I typically enjoy reading your column – even when I don’t necessarily agree with your take on things D related, since it makes me think and step outside my comfort box. This post, though, it’s not sitting right. I think b/c while you hedge, acknowledge some factors to a limited extent, you still fall on the side of current D parent practices = overkill. A lot of your supporting evidence is anecdotal, the very things you take D parents to task for. I get that achieving a balanced article is beyond hard – I’m struggling with my own efforts at a balanced reply.

    Before my child was Dx’d, I worked as an RN for a long time, both med / surge, critical care, peds & finally hospice. I realized a few things after my dd was Dx’d and I’d been out of bedside care for only a few years. Insulin regimens have changed drastically, and while the new analogs might have a flatter profile, that very fact has led to efforts to achieve tighter control. We knew that NPH had wicked awful peaks, so super tight control was not exactly something docs advised. Instead, kids had a much more regimented dietary and meal schedule to avoid the wicked drops. Today, kids and parents have the option of aiming for tight control (say 80 to 110 or tighter) and a goal A1C of <6.5%, but, that kind of tight control correlates to a lot more lows, and a higher rate of hypoglycemic unawareness. We’ve also learned over time that some kids don’t experience the flat and steady line of insulin action expected of lantus, making avoiding lows on MDI difficult for families in that situation.

    So, why are we okay with that? Because we also have a whole lot more info about the complications of D – now restated as ‘that can’ – occur later in life. We understand that the likelihood of those complications are tied to A1C over time, as well as in relation to BG variability over time (wild swings between low end 70 ish to anything over 250). Many of us have personal experience with what those complications really look like, the toll they take on the individual and the family, and given the tools to prevent them, that's what we've set our sights on.

    CGM and parents like myself who've discovered a child seizing in bed have now amassed enough data to question the false notion that all diabetics awaken from lows (some do, some don't – chances are those of us with kids whose lows don't wake them test at night b/c, frankly, watching your child seize in the middle of the night sucks!)

    I arrived here via a link citing this article as evidence that we need to expect our kids to take complete responsibility for their care – all aspects – by at least age 16. Talk about setting the stage for burnout or failure. There's going to have to be a happy medium. Parents who choose tight control for their little ones, or support tight control desires of their older pre teen / teens have to realize that there will likely come a time when our kids no longer want to work that hard – and we're going to have to let go. But, between now and then, it's a team effort filled with lots of talk / discussion on goals, desired approach and a gradual release model. I like it to teaching our kids to drive – we start out in the drivers seat, share our thinking, decisions, etc. Our kids ask questions, begin to notice processes, ways to analyze conditions. Eventaully, they land in the driver’s seat with us right there to guide, redirect and seize teachable moments. Soon we wait for them to ask for guidance, while they share their thinking and decisions with more confidence. Ultimately, the goal is that they become a far better driver on their path than we could ever be, largely because we modeled healthy choices, provided opportunities for practice, and always conveyed the message that our kids never, ever going to have to forge this road completely on their own. No matter how others perceive us D parents, I'll stick with the research that says we need to stay connected and involved into their late teens.

    1. Ben
      Ben July 29, 2013 at 9:55 am | | Reply

      +1 Good response.

  29. Amy
    Amy July 27, 2013 at 7:58 pm | | Reply

    I wonder what the parent of a child with diabetes who passed away during the night from a low would have to say after reading this? While I can appreciate the fact that you took on this very sensitive subject matter, I think your approach was all wrong. You came across as sounding more cynical and judgemental as opposed to taking the high road and accepting that type 1 diabetes management is varied and individual and personal. Name calling and choosing to place labels and use demeaning words to those that choose to check their child at night, is not an effective or helpful approach at all. I would love to invite you over to my house one night after my 9 year old child does gymnastics for two hours, jumps on the trampoline in the backyard after dinner for an hour, and then has a friend sleep over. I would be curious to see how you would handle avoiding lows without checking her all night. Or wait…maybe it wouldn’t affect you or your decisions because she’s not YOUR child.

  30. laura
    laura July 27, 2013 at 10:45 pm | | Reply

    I really enjoyed your article. I’m a night checker and I didn’t feel criticized by Tom’s question or the reply. I agree the article was well balanced.

    I’m in the “to do my best to keep them in range for all those sleep hours” camp. But I also appreciated that you talked about the health effects of sleep deprivation. I feel it and I do work in some nights of rest. We do what works for us.

    “spoiled brats”…meh. That didn’t bother me. I think the transition to adulthood is as different for every kid as night time blood glucose variability is as EVERYthing about T1D is. My older has two years before starting college and I appreciate the story of the 17 yr old. It gives me the nudge to make sure we’re where we need to be in our (scary) transition. And the quoted “competent teen” made me giggle – which is only a *little* telling of our goings on.

  31. Colleen Allison
    Colleen Allison July 28, 2013 at 11:57 am | | Reply

    Great article. I have three kids with T1 and we have lived with it for 8 years now. Onset for my kids was at 15, 5 and 16. We have always encouraged independence. Yet, of course, are always tuned in to needs. My kids can test 10 times a day–all wear pumps–yes, I worry about them and go with my gut. I have to truly trust in God like never before. All if them have good A1C, yet I am not a middle of the night tester except on rare occasion when I feel it is needed. I let my 15 yo spend the night at a friends 2 weeks after diagnosis. We try to keep life as normal as possible. She also at 15 assumed complete care as we were taught in St. Louis at the children’s hospital. I was there more as support person as she gained complete independence. She is now an RN. My 20 yo son is all muscle–doing awesome w/ exercise and diet assuming responsibility. We also ha e a son with Down syndrome and autism, so I expect other kids to be responsible and cannot baby them. Hearing about these parents who check their kids every night I was questioning myself–yet I think we are doing well and I do test my 11 yo when I feel she needs it.

  32. Proud Parents
    Proud Parents July 30, 2013 at 10:04 am | | Reply

    Number one we don’t believe this was a real question. If it had been seems that a parent of a Type 1 would have been better equipped to answer the question.

    Seems as though this was an opportunity to blast parents of young CWD. We feel some in this little blog community may not appreciate having our voices at their conventions and on their website.

    We aren’t going anywhere guys. We raise funds for a cure and determined to fight for our kids. Embrace the youngest within your community and their families. Quit assuming we parents are not preparing our kids to live independently. Our mutual goal for a cure will get much further with that attitude.

  33. AngelaC
    AngelaC August 2, 2013 at 6:14 pm | | Reply

    I used to help administer an online group for parents of children with diabetes nearly 20 years ago and I can say without hesitation that ALL the parents I knew back then were concerned about their children. Many tested multiple times during the night, purchased multiple meters and strips for their children who were in school, made special snacks for their kids with diabetes, and even fought schools, nurses, and even doctors to ensure the child had the right to test and treat in the classroom. From what I have seen, the parents of these children carry a tremendous load and always have. Are there some who take it too far, who do not allow their children any freedom, who impede their child’s development? Yes, without a doubt, but I would argue that happens to parents of children with any variety of conditions, not just diabetes. Do parents of CWDs have cause to be concerned? Again, the answer is yes. I have known parents who have lost their children to diabetes because of lows. And, no, it wasn’t the parents’ fault, nor can I blame the medical profession or even “diabusiness”. Unfortunately, diabetes CAN KILL. And, if I were a parent of a child with diabetes, I would do nearly anything to keep my child safe and from becoming a statistic.

  34. Heather Houston
    Heather Houston August 2, 2013 at 6:28 pm | | Reply

    D-Parent to 21 yr old non verbal, autistic, T1. Autism won’t let him wear a pump, no continuous glucose monitoring. I have to be awake and test him all night. He has 24/7 sight supervision and testing 8 times a day. I wish I was just spoiling him, so I could stop but if I stop testing at night…that’s the night he’s hypo, seizing, and dying. Generalizations are a dangerous road to travel.

  35. jaber
    jaber August 2, 2013 at 10:05 pm | | Reply

    1-What is the pigment that determines the beta cells of infected

  36. Jennifer Haveman
    Jennifer Haveman August 6, 2013 at 10:31 am | | Reply

    I was diagnosed when I was 8 years old, 34 years ago. From the beginning, my parents’ attitude was, “This is YOUR disease, Jen. YOU own it.” (My mother is also Type 1 diabetic, dx’d in 1963 when she was 15. That’s important to know here. She, of ALL parents, KNEW what diabetes does!)

    The day after I got home from the hospital (all new diabetics were hospitalized for the first few days, even when we WEREN’T keto-acidotic) my dad said, “You don’t eat breakfast until you give your own injection.” It took me a while, but with my mom sitting next to me, I did it. When I changed insulin, my parents reminded me to set my own alarm and test my own blood sugar, and I did it. Once, when I accidentally gave my morning dose (which was much larger) in the evening, they did get up with me a few times to make sure I didn’t get too low. But nobody watched too closely, because that was MY job. And I did it.

    There is a difference between doing PRUDENT things to help your child be successful in his/her diabetes management and feeling so bad/guilty/afraid that you do it all for him/her. A HUGE one. I think Wil hits on that here, but maybe doesn’t make that differentiation as clearly as it needs to be made. Having a kid with diabetes makes the parenting trickier, not as much because of the testing and worry, but– if you’re smart– because you HAVE to figure out that balance between helping your kid and crippling him/her.

    My family knew two other families with Type1 kids. One was so controlled she rebelled– decided her life needed to be HERS. She left home, did drugs, got pregnant, and now needs their “help” for the rest of her life because she never had to OWN either her care or the consequences. Another went to college, and without the hovering parents to control his every move, drank and partied and got sick and failed out. He came home, where mommy continued to test his blood sugars and pack his snacks.

    Be prudent– but make SURE your kid OWNS his/her disease. Trust me, it’s a sucky thing to have to keep track of. But sometimes it is what it is, and knowing that and dealing with it (as the Type 1 Diabetic) makes all the good stuff easier to enjoy. (I gave birth to two healthy, lovely daughters and have no diabetes-related complications. I *could* be doing better, but I’m DAMN lucky my dad said “This is YOUR disease– now own it.”) –Thanks, Wil. You probably made a few people think, and that’s ALWAYS a good thing!

  37. Julia
    Julia August 19, 2013 at 6:58 pm | | Reply

    Wow! As a man who has been fortunate to have developed LADA in his twenties which is late onset type 1, slower in onset and possibly more benign than the childhood version, as a man who lived a carefree childhood free of this disease you show no compassion or understanding for young children afflicted by this disease. I see you are a parent. Thank God you did not have a child with this disease. Our DD was diagnosed at 8 years of age and believe me she owns it. She has owned it every day and every night 24/7 since diagnosis. The one time she cannot own it, for obvious reasons, is when she is SLEEPING. She’s 16 now and you bet your life we are up checking overnight. Not all kids want to wear the Dexcom, which requires two site changes. And I can only hear the Dexcom if I have a baby monitor lying next to it. To the man who treated the low with a peanut butter on toast and half a glass of milk, I say this: That’s 20 grams of carbs. That will raise our DD’s blood sugar 100 points. Heck no, I am not putting her to bed with a blood sugar of 200 every night so she can suffer complications in her twenties. And there are times her blood sugar drops and I may be feeding her 40 or 50 grams overnight. Or if she is high, sometimes we have to increase her basals. We have to correct. Only an idiot would correct these very insulin sensitive children and trot off to bed. That crack about the wall of blue candles that we didn’t have when we were young… I don’t give a flying fig about the wall of blue candles on the internet; I care that when I go wake my daughter up in the morning, she will be alive and breathing. Your post was in very poor taste. You are obviously uninformed. In addition, you are insenstive and erroneous. Dangerously so. I would advise all parents to ignore the comments of well meaning but misinformed adults with diabetes who have not the slightest idea of how to treat a child with diabetes. None of the adult rules apply. A child with diabetes and an adult with diabetes are two completely different situations. And comments like these that come from a supposed “expert”. Parents, run, don’t walk from such advice. This man has no idea what we deal with. He has no idea what he is taling about. And if you listen to his advice, there are going to be a lot more blue candles on the internet wall. Disgusted in New York.

  38. Tammy
    Tammy January 26, 2014 at 3:34 pm | | Reply

    Overkill? No.

    These are the actions of loving and dedicated parents doing what must be done because we know the risks!

    My son was diagnosed 10 years ago, and within that time the pressure from his diabetic support team to keep that A1c tight has increased dramatically. As we are constantly reminded ‘he has a lengthy battle ahead with this life threatening illness – and the complications are real’!

    As a young person with autism my son has not been able to take over the responsibility of independent management; it falls upon myself and his father to be there for him – no matter the time of day or his age, as he is unable to care for himself. Yes, we may be one of those exhausted parents!

    I do not take offence by questions, and hope I helped to explain the unique answer from our situation – what I cannot express as well is the unrelenting worry, for not only when the next hypoglycaemic episode may happen, but the relentless march of time…

    … Our biggest hope is for a cure for type 1 diabetes within our lifetime, for whom will care for our son after we are gone?

  39. Leah
    Leah August 13, 2014 at 2:48 pm | | Reply

    I actually read this article in the middle of the night about a year ago and didn’t leave a comment (or maybe I did?). To tell you the truth it got under my skin to say the very least. It was somewhere between 2-3 am and I was up waiting for my 2 year olds BG to rise. I must point out that night checking came straight from the endo. I’m wondering if the endos who recommend periodic testing are peadiatric endos? Until its your child, you can’t really say. I have friends with type one who practiced the same toast and milk before bed routine. They now are late twenties/early 30′s and all have some sort of complications. Every night for the past year my daughter would go high mid to high 20′s (450-500) then without any correction given drop around 2-3 am to 2.something. She was screaming and throwing herself around with those highs to the point where videoed taped it just for some to believe me to try and get it sorted. Perhaps if I showed you that tape you would change your tune (it’s not going to happen). We ended up in hospital for a week after a tummy bug. They kept us in there to “level her out” it couldn’t be done, it just got worse. Things have settled down a bit now with the help of finally getting onto pump therapy but it still happens and now we check at midnight, 3 and 6. Do you really think parents would choose to do this everynight if it were optional?!? Or if we thought our kids would be happy and healthy? Hell NO! I haven’t had a full nights sleep in two years! Why shouldn’t we spoil our T1 children when every day we are confronted with their mortality? My daughter may be spoilt but she is also kind, well mannered and empathic. She is only 3 and she already has responsibity that no toddler should have and she is only going to get more. To “own” it means taking some of my daughters childhood away. Let me get one point across I and my husband ARE RESPONSIBLE for our child until she reaches adulthood. Yes we will pass the reigns over to her gradually but why put more pressure on a child then is abosolutely necessary!?! I am not sure if either of you are parents but if you are would you complain to your child about caring for them and make them feel like a burden? I’m guessing no! Well stop and think that maybe your parents had a harder time than you think but didn’t share it with you.

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