My Child, When Low….Will Wake up…..Right? Um…..Not Necessarily.

I had the opportunity to hear Jeff Hitchcock present this weekend and he addressed night-time testing and the ‘thought’ that our kids wake up when they feel low.

It is thought by many (us…..definitely) that should our kids start to feel low while they sleep they wake up.  I know for me it was a fore-gone conclusion because Kaitlyn has done it most of her life.

Does it turnout that we were merely fortunate?

A study from the University of Luebeck in Germany tested 16 nonT1 patients and 16 with T1 diabetes.  During the control time none of the patients awoke.  In the test of the two groups presented with hypoglycemia; 10 patient in the healthy group awoke when presented with hypoglycemia while only 1 in the group with T1…….

Conclusions: A fall in plasma glucose to 2.2 mmol/l (40 mg/dl) provokes an awakening response in most healthy control participants, but this response is impaired in T1DM patients. … Failure to awaken increases the risk for T1DM patients to suffer prolonged and potentially fatal hypoglycemia. ***

How conclusive is this study?

Well given it is not a huge sample; but it is enough for me to know that either by CGM or testing in the middle of the night is something we probably should all be doing more; and not merely depending on our child, and/or loved one, to merely awake on their own.

This is not written to scare anyone but numbers are numbers and it is a tool/guide/reference for us to consider as we work through the daily management of diabetes.

It has always been just accepted that Kaitlyn and Rob would just wake up when they are low…..this study paints a different picture albeit a small sample group.  That said; until such time that someone tells or shows me differently–we will no longer JUST ASSUME they will wake up when low.

Granted that other factors may play a role if we choose to wake up and test them in the middle of the night or not–but one of those factors, which will be removed in our house, is the 100% belief they will just wake up.  How about you?

I am a Diabetesdad.

Editor’s note: My point here is we probably should not merely 100% accept that every time PWDs go severely low in the middle of the night—they will just wake up. 

 

***Bernd Schultes, Hamila Jaich-Chara; Eva Reiprich; Werner Kern; Alchim Peters; Herst L. Fehm –Department of Internal Medicine University of Luebeck, Luebeck Germany
Steffan Gais; Manfred Hallschmig; Jan Born-Department of Neuroendocrinology; University of Luebeck, Luebeck Germany
Kerstin M. Oltmanns- Department of Psychiatry & Psychotherapy; University of Luebeck, Luebeck Germany
Emails may be directed to: Schultes@kfg.uni-luebeck.de

39 thoughts on “My Child, When Low….Will Wake up…..Right? Um…..Not Necessarily.

  1. Wow, I guess we are also fortunate. My teen also wakes up and wakes me up when she is low in the middle of the night. This study is kind of scary and an alert to me as a parent

  2. Thank you for this Tom. I am parent who checks often because my child has not once woken from a low. I have had comments from other parents that I may be too obsessive. My girl has been sleeping with her head on my lap (movie nights) more then once. Noticing a pale pallor, tested once at 29, once at 32. Now we are blessed with a CGM. Still test at least once each night.

  3. My 10 y/o daughter (dx 6/2010) is aware of her lows (and some of her highs) during the day but never when she’s asleep. She has never awakened when low. She tried the CGM but did not like it because it was painful for her. She won’t wear it anymore but says she will consider it again when she’s older. So I check her once or twice each night. Regular parents are amazed when they hear this (“It’s like having a baby in the house!”) but most D parents don’t even blink because a lot of them are doing it, too.

  4. It was that “one time” I did not check him….. enough said. Check them every night or insist on the CGM, because you have to.

    • Thank you for spreading awarness Jen (& Tom!!) My 14 year old usually gets *mad* in the middle of the night when I go in to have him check – so thank you for giving me fuel for the fire to keep bracing myself and doing it anyway. He is not interested in tubing/pumping so we test based on the last Novolog dose and amount of exercise.
      Just want to say that even though we do that, it would be possible to miss something – just like I have to trust when he spends the night out that he tests when he’s supposed to. He usually wakes up when low but am aware that there is *always* room for us to miss that “one time” because sometimes this thing is just unbelievably unpredictable. I know of Trent through facebook and the rides you go on – and will always remember and work for a cure however I can for him, my son and all of us.

  5. My DD just turned 7 and was diagnosed on 9/15/2011. We check every night at midnight and 3am. More frequently with extra activity, illness, persistent lows, etc. She also wears a CGMS 24/7. She is hypo unaware during her waking hours and medicated for sleep disturbances at night. For us, not checking never was an option. Even with the CGM I don’t feel safe not doing a finger stick.

  6. You are very fortunate if your child wakes up in the middle of the night when they are low. Our daughter has been T1D for over a year now and she never wakes up.

    We get up every night at 2am and check her. She has been low more times than I can count. Once she was so low her level never registered and she was not comprehending what we were saying. Very Scary.

    She has also been in the 40′s at least a dozen times.

    I will say that my daughters levels have been so low, she doesn’t really feel her lows anymore. Once in a while she will, but many times she is in the 40′s and 50′s and not feeling them.

    If she goes into the 300′s for a couple of days, she ends up in the hospital in DKA.

    • Hi jerry! Was reading your comment and it sounds like your daughter might have hypo unawareness. Back when my sugars were always high i could always feel a low but in the last few years ive started taking care of myself but im not able to feel lows anymore. If the body becomes accustomed to have low or very tightly controlled levels , it can fail to alert us when we need it. I have collapsed on countless occasions. I know that i need to bring my sugar levels higher abit in order to restart the warning signs but im having trouble doing so. I can imagine what your daughter goes through, i hope things get straight for her:)

  7. My daughter has been T1 for 3 years and has never – not once – woken up from a low. She was dx at 9 months, and is only beginning to (very rarely) feel lows when she’s awake. We always have (and always, for the foreseeable future, will) test at night. I pray she eventually develops the ability to wake with them, but we aren’t there yet.

  8. I check my son 2-3 times a night. He doesn’t wake for lows, for his CGM alarming when he’s low, for temp basal rates finishing on his pump… for anything! To be honest, I doubt he’d wake if Godzilla were roaring outside his bedroom window!!!

    I’m not taking the chance that he might hypo whilst asleep and suffer the consequences….

    Not on my watch!

  9. I am not the parent. I am the grandparent to Emma, better known to my grandchildren as Noona. Emma stays with me Friday night and Saturday night to give her parents a break from the 3hour, yes I said 3 hour, checks around the clock. Emma is 3.5 years old and has NEVER said to me, I think I am low during the day. The lowest she has been was 35 when she was with me and she did not wake up. I had a difficult time waking her to drink juice. She had been 110 an 45 minutes before. I was concerned because she had been low earlier in the day. I did not wait for the next 3 hr check. I checked her again at 45 minutes. There are many times her parents and I do not wait the three hours. I as her Noona will do whatever it takes to keep her safe, even if it means hourly checks when “numbers” concern me. Blessings to all T1′s and their parents and grandparents.

    • Hi there. I am a mom to a t1d for 4 1/2 years and both of my parentd have not offered to learn what needs to be done nor have they ever had my daughter overnight. I would just like to say that you are not just Noona but Super Noona in my book!! God Bless you :)

      • I am grateful my son and daughter-in-law have allowed me to be involved and trust me to care for Emma. How could I not learn? My other grandchildren come to spend the night and I cannot imagine not having her. She is a blessing to us all and my hero!

      • Amy you and Michelle are very kind. I cannot imagine not being involved. She and the other grandchildren have always come to spend the night and I was not going to tell her no. I learned. I must say, however, her Pap however is very supportive and has watched me a many times wants to know what we do for her, but says he can’t yet. Her other grandparents say they are too nervous and have let her stay a couple times. As long as my grandchildren want to spend the night with me, I will do whatever it takes to have them here………all of them!

  10. This is quite scary to read. Many times I have felt like a bad parent for not waking to take my 12 YO BS. Amanda is 6 month past DX and is pretty controlled. Has woken up 2-3 times with lows, so I feel confident that she will for NOW. I know that the this may change once she goes on a pump. Going to bed at 170, she will wake at 125/130 most of the time. She does not take long acting insulin any longer because that was causing lows.

  11. To me,its not worth the chance. I get up once, or if numbers are lower, I will get up however many times necessary. Me being tired is better than the alternative.

  12. In 2005 I too was told my son (then 5 years old). Would make a noise or wake up if hypo durning the night. This has never once been the case, since 2005 I have checked his bg every 2 or 3 hours durning the night. My son is expert at chewing fruit pastilles whilst still asleep !

  13. Not a parent but have had T1D for 30 years (since age 12). I have always woken up but the question I’m haunted by is, how long was I running so low? It feels like hours sometimes. My parents probably checked me when I was young but I don’t recall – and I lived alone for 6 years long before CGMs. Just the other night I woke up for a 34 mg/dL that presented NO symptoms. Guess the moral is, do whatever you think is best for your T1Ds and thank goodness for CGMs.

  14. I was diagnosed, at age 5, in 1970. We didn’t have meters, let alone cgm devices, and I remember, during the first year, having several lows where I woke up to my mom coaxing OJ down my throat. I remember sometimes having partial paralysis, one hand and one foot utterly numb from a low. My mom’s ears became so sensitive that from across the hall that if she could hear me roll over in my bed too quickly, she knew to get up and prepare for me to be semi conscious. We are so blessed to have devices that have changed the landscape for us.

  15. Our endo just thanked us for still doing our night time checks….its been 5 years! Zachary never wakes and has gone low many times!

  16. And that is why I insist my daughter wear her cgm and why I scrimped to pay for the mySentry even though insurance didn’t cover it and why I won’t let her switch pumps….cannot tell you how many nights, the mySentry/cgm has caught a low….and even when it errs, it errs on the side of caution. She even takes it to sleep overs so it will wake her up, because otherwise she’d sleep through pump alarms.

  17. Growing up my son only once did not wake up from a low and that was when he was first diagnosed. We had 23yrs. Of no lows during the night that he did not feel on his own and his endo was always pleased with his numbers. After returning home from being way at college and having real tight ( he is now hypo unaware) control he has had two seizures in the middle of the night. First one was really bad and I had to use the glucagon which I always have in the house.( I’m 60 and my hearing is not good) God was looking out because I woke up!!! I hate to be reminded that these incidents don’t just stop at a certain age.! There is always a chance of a T1D having one and the fear that he / she will not wake up or have someone to help pull them out of it. My son will be moving on soon and I worry cause he doesn’t always hear his CGM. It’s scary when they are young, but it’s just as scary when they are out of the house and living alone.

  18. Tom you are so lucky both that your kids would wake up and to have the CGM. My son was diagnosed over 12 years ago. Our only CGM is the Continuously Monitoring Mom who wakes throughout the night and tests at random times. In the past six months, he has begun to wake himself for some of his lows. This is a major event for me because I am terrified when he sleeps somewhere that is not accessible to his “CGM”. I still do not rely on his new found ability. I have found that he has looked the most sweet and peaceful when he is 2.0 (36). That scares me. I do not however test at night just out of fear. For me, testing also provides valuable information that allows me to properly adjust overnight basal rates.

  19. Our son is four and he also never wakes up when he is low. We have been checking him at 11:30 PM and 2 AM for a long time now. It seems that everything makes his blood sugar change. Play time, sickness, the sky turned blue today etc…

    We have had some very scary lows at night. It seems that just when we think we have him tuned in everything changes again. As a parent I am concerned when he gets old enough to have to manage all of this himself (hopefully there will be a cure soon) how will he do. There are two of us to get him through the night now. That is a lot for a teen or young adult to have to manage on their own. I know that there are millions of people out there that do manage this but it will not keep me from worrying.

    I do like the comment about about the “normal parents”. I would have to disagree we are not normal parents. To deal with T1D you have to be a bit exceptional weather out of love or fear or both.

    We found out last week that our son also has Celiac disease as if diabetes was not enough to deal with. We are not sure what we are dealing with but he goes in for an upper GI scope in December

  20. As a type 1 for 12 years now, I would feel most of my lows, but not all. I think the best tool out there right now is a diabetic alert dog. Much more accurate than a cgm. Over 18 months and I have yet to wake up without first being alerted.

  21. My son was dx’d when he was nine and at fourteen still rarely wakes up for a Low or High. The scariest Lows and Highs have happened in the middle of the night. I checked every night at 2am. The past three years Chris has been using the DEX when is awesome!! Now I get up with the alarms. I get to sleep all night when he is at D Camp.

  22. Our daughter has had hypoglycemia unawareness while sleeping throughout her 17.5 years of Type I. We woke up at least once, usually twice a night, to check her, throughout her growing years. And, even with that, found her too many times to count in a seizure! For the most part, her control was never what I would consider “tight” enough to cause the nighttime unawareness, and her awareness while awake was better. She was, however, an extreme athlete in high school, which caused havoc on her bg control. She just turned 24 this week, and her adult years have brought much heartache for us as her parents in the form of fear as she has asserted her indepence and rejected our concerns. When she left for college, it was difficult when we would wake during the night wndering, yet she was out of reach. After somewhat adjusting during her first semester away, she seized here (at home) twice over her first Christmas break–even once during broad daylight and at Target! My mind did backflips, and it was even harder to “rest” after that. She finished college, is now an RN, and lives in our basement. Of course we see her often, but rarely “check” on her, unless a rare, overwhelming concern tickles my brain and heart. After first moving back home, there was a period of six weeks where I found her unresponsive ten times!!! She was quite aggressive against our concern. Things have gotten somewhat better in the last eighteen months. But, just this weekend, after having spent a week as a counselor at diabetes camp, she had an overnight event in a hotel room we were in. After I woke up four times in a 1.5 hour period (2-3:30am) hearing her talk to herself, questioning if she was fine, her replying yes, but me still doubting–we checked her and she wasn’t okay. We treated. And slept. Since college graduation, she has been very anxious to get her own place and thinks we are “controling” her if we make any suggestions about not living alone, etc. Twelve straight years of less than optimal sleep and almost seventeen years of hypo-stress has taken a toll on my own health. She is a wonderful young lady and highly celebrated in every other facet of her life! I long for a cure. But, for now, I’d be overjoyed if she just saw the selfishness in her zeal to be an adult (in that area) and relaxed into accepting that the concern of her loved ones is okay and just the way it is. One of her endocrinologist’s told us: “It’s her choice. If she dies in her sleep, she dies in her sleep.” But, that is NOT good enough for us–because we have to live with the aftermath. I remember as a young person myself, I never wanted to wear a seatbelt, even when it became law, until the day my first son was born. Then, I realized life wasn’t just about me. I keep hoping that my daughter will have a similar awakening and simply accept, relax, and spare us the consequences of her own bad decisions. I welcome any suggestions, but I do NOT want to be attacked or scolded.

    • My granddaughter 4 1/2 years old. She was diagnosed at 2 1/2. She spends the night with me at least once a week. I check her every three hours, sometimes every two depending on her BG. She has never woke up while having a low. One night when I check her, she was 182. Her target is 150. For whatever reason I woke up an hour later. I turned on the light to look at her. Her fists were clenched. I checked her and she was 52. :( I pray something always wakes me…………I think it was God or my guardian angel, my son, that died when he was nine. Hugs to all you parents…………I pray for all of you each day.

  23. As a father of a 13 year old boy whos been diabetic since 3 yrs old I can relate to a lot of the comments on here. I dont live with him full time but when he stayed last time he had a seizure and I had to apply dextro gel to his gums whilst other family members called ambulance .he’s with me now and am watching him sleeping as I now check his blood through the night every 3 hours.when it’s your own child the panic and fear is the quadrupled ! I worry all the time whether he’s over exercised or other scenarios that bring on hypos ! Ive got used to the fact hes t1d but the fear is always with me and it can drive you crazy worrying 24/7 . God bless all parents who go through the same trials and tribulations x

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