- advertisement -

I'm not the only one, am I...

Discussion in 'Parents of Children with Type 1' started by TheTestingMom, Oct 16, 2014.

  1. Sarah Maddie's Mom

    Sarah Maddie's Mom Approved members

    Joined:
    Sep 23, 2007
    Messages:
    12,521
    Lows here tonight… despite carbs and hours ago reduced basal, under covered dinner still she's stuck between 50-70… yawn, panic, yawn

    I just don't expect my non-D friends to get it. I'm reminded of this when I chat with a friend with a kid with cystic fibrosis and her routine. No one gets it till they live it. Can't be helped.
     
  2. virgo39

    virgo39 Approved members

    Joined:
    Jan 8, 2010
    Messages:
    1,691
    Last night, opposite story, high with repeated corrections and increased basals, checking every hour so...

    I agree that I don't expect my non-D friends to "get it." But I think a lot more people than you think are dealing with something -- some other illness or serious issue. In that respect, we are not alone.
     
  3. DavidN

    DavidN Approved members

    Joined:
    Sep 7, 2012
    Messages:
    744
    I don't expect non-D friend to get it either. Last week I'm at breakfast with a friend and he says, "I don't understand why you're tired because of your son's diabetes. I spent time with another family who has a kid with diabetes and they never check at night and they say it's not that big a deal." A year ago I would have made an effort for him to "get it". Now I just move on.
     
  4. rgcainmd

    rgcainmd Approved members

    Joined:
    Feb 6, 2014
    Messages:
    1,383
    I feel sorry for those kids with T1D whose parents sleep through the night without a care and believe that T1D is "not that big a deal." I'd put money on the fact that their kids' A1Cs and average estimated glucoses are crap. Unless those kids were blessed with those "protective genes" that ward off complications even in PWD who have years of poor glycemic control, they carry a much higher risk of experiencing complications. Maybe their parents figure "Oh, well, by the time they have complications, I won't be around to deal with it, so whatever..." The possibility that my being in a constant state of sleep deprivation (because ain't no one else in our house willing to do night checks and management) will decrease my daughter's chances of having complications is so very much worth it. In the grand scale of things, it's a small price to pay for the chance that my daughter will have a better quality of life for a longer time.

    That being said, in situations like the one DavidN encountered, I, too just move on (more often than I used to, at least). I'm learning that it's just a waste of my breath and emotion to try to explain how things really are if you give a significant damn about the long-term health of your child with T1D.
     
  5. TripleThreat

    TripleThreat Approved members

    Joined:
    Oct 31, 2007
    Messages:
    1,785
    I have one who will hold his breath when he hears me coming, usually because one of his sibling were low and he heard me treating them. Drives me crazy he's had a few pillows to the head
     
  6. rgcainmd

    rgcainmd Approved members

    Joined:
    Feb 6, 2014
    Messages:
    1,383
    You've gotta have a sense of humor to deal with T1D! I can only hope that my daughter doesn't read your post and get any "funny" ideas...;)
     
  7. dshull

    dshull Approved members

    Joined:
    Sep 24, 2012
    Messages:
    114
    I'm with you!! I'm especially on edge because tomorrow night my son is going to his first ever sleepover birthday party. For most parents it would be a nice night off and for us, I won't be able to really exhale until I get that call from him in the morning. He is soooooo excited and I'm so not. But the parents offered to do whatever it took to have our son there, which was so kind it brought me to tears.

    Borrowed a baby monitor from a neighbor and will give to the parents to listen for dex alarms. They only live a mile away so my husband will run over if he alarms high or low. I just have this tightness in my chest just thinking about it but I know he needs to go. I know you can all relate!!
     
  8. sugarmonkey

    sugarmonkey Approved members

    Joined:
    Feb 16, 2008
    Messages:
    1,713
    I was up all night last night treating lows. He couldn't get about 3, no matter what we did.

    DS's cousin also has T1. A couple of months ago we were staying with them. I said something to DS about setting the over night alarm. His aunt said 'We never test at night. I need to sleep.' I need to sleep too, (and today especially, can barely stay awake), but I also need to make sure DS is safe, as I've seen too many lows we would've missed without testing. I would have more trouble sleeping if something happened and I hadn't tested.
     
  9. AEM210

    AEM210 New Member

    Joined:
    Apr 27, 2014
    Messages:
    2
    My daughter was just diagnosed 6 months ago (age 11) She was diagnosed at a Children's Hospital in the Northeast USA. They never told me to do night time checks. She slept in my room for months after diagnosis because my husband had just been relocated for his job and we were staying behind so the kids could finish the school year and the house could sell. She was in my king bed with me but I didn't test her because they told me only daytime. I even asked when I read it here a couple weeks after diagnosis. The Pediatric Endocrinologist, the nurse practitioner and diabetes educator all said "we don't recommend that, we believe you both need your sleep" When I pressed further they said if she is sick or has a low before bed I can test during the night.
    I've since been to many support group meetings and the answers are mixed. My daughter has an A1C of 6.8 We are very vigilant with her diabetes care in the day and she's never gone to bed with a low. If she was ever sick or fighting a low at night I would absolutely test her in the middle of the night. Right now I believe she's still honeymooning so I'm sure my answer will change when she her numbers start going all over the place. Just wanted to chime because I'm the last person anyone who knew me would say doesn't care about my daughter or her type 1 care.
     
  10. sszyszkiewicz

    sszyszkiewicz Approved members

    Joined:
    Dec 24, 2013
    Messages:
    842
    All I can say this morning, is thank heaven for the dawn effect. Had soccer last night and even after an uncovered 30 carb ice cream sandwich at 10PM (a mere six hours ago) I was fighting lows all night!!!! Team picture at 7:30. I bet he will be well rested ;)
     
  11. MomofSweetOne

    MomofSweetOne Approved members

    Joined:
    Aug 28, 2011
    Messages:
    2,747
    Go to the main CWD page and read the research on nighttime hypoglycemia. Get a CGM and set the low alerts to the lowest they go if you don't want to be awakened as often. With a daughter at puberty age (or soon), you will see highs and lows that terrify.

    A friend of mine was told by her diabetes team at a huge-name diabetes center not to test at night. She started testing after reading here. She found her daughter was in the 40s at night. She thinks that contributed to her daughter's hypoglycemic unawareness.

    With an A1C of 6.8, you have a much higher chance of her being low at night than if her A1C were around 8 or higher.

    Something that doesn't get mentioned often is that seizures can have life-time after effects such as compressed vertebra of the spine.
     
  12. Sarah Maddie's Mom

    Sarah Maddie's Mom Approved members

    Joined:
    Sep 23, 2007
    Messages:
    12,521
    I wish it were as simple as, "get a CGM". Like it's a lava lamp you plug into the socket.

    While my kid wears a CGM 90% of the time, SHE has to wear it. She has to deal with it being in and on her body 24/7 and the itchy tape and the lump it makes under clothes and the irritation of having it alarm smack in the middle of a math test, so while I whole heartedly encourage CGM usage I respect the fact that it isn't as simple as going out and "getting" one.

    While there is a great case to be made for CGM'ing not everyone weighs the pros and cons in the same way and maybe the CGM'ers on the forum could be a little more sensitive to that and a little less aggressive in resolving every D problem with the advice of "get a CGM".
     
  13. MomofSweetOne

    MomofSweetOne Approved members

    Joined:
    Aug 28, 2011
    Messages:
    2,747
    But neither is it as simple as the diabetes team saying "Don't check." I think we all know that the vast majority of diabetes teams don't have a clue what dealing with this is like IRL. I asked our pump rep when my daughter would outgrow not waking to lows. He hesitated and then said, "I know what answer you want, but the truth is that when I started wearing a CGM, I learned that I was spending hours in the 40s every night despite going to sleep and waking at the same number." If one is not checking nor CGMing, how does one KNOW whether their child is in a safe range? And when there are research reports backing that type of information, why do the medical teams not at least give that information to parents so that they can make an INFORMED decision? I've been appalled by the number of parents that have posted on here saying their endos aren't supportive of CGM.

    I know the decisions about CGM are not simple. Nothing about diabetes is.
     
  14. Sarah Maddie's Mom

    Sarah Maddie's Mom Approved members

    Joined:
    Sep 23, 2007
    Messages:
    12,521
    I never sided with the endos who dismiss night checks.

    CGMs are not band-aids nor are they the only way to ward off nighttime hypos.
     
  15. mamattorney

    mamattorney Approved members

    Joined:
    Apr 9, 2013
    Messages:
    1,076
    Wacky Lows, lows, lows, here too. My daughter hasn't had a bolus since yesterday at lunch. She was in the 60's at dinner while on a 50% temp basal. No bolus for dinner (admittedly low carb because she doesn't like mashed potatoes - about 25 carbs for breaded chicken and green beans). Went to bed at 120. One Lows overnight (on the 50% decreased basal). Woke and dexcom said 90, but meter said 70. Volleyball in 2 hours. No bolus for breakfast (a 47g Pillsbury Grand Cinnamon roll - hey it's Saturday!), decreased basal even more to 30% of normal and went off to volleyball. She stayed between 100 - 105 the entire game. This is nuts!
     
  16. rgcainmd

    rgcainmd Approved members

    Joined:
    Feb 6, 2014
    Messages:
    1,383
    I used to think I was "very vigilant" with my daughter's diabetes care: she never went to bed with a low, always woke up with good numbers AND rarely had lows when I checked her BG one to three times per night. Then we got a Dexcom and I saw for myself how many out-of-range (both low and high) numbers she had in between those night checks. To put this in further perspective for you, my daughter's A1Cs have been 5.8, 5.3, and 4.8 during this time period (with few daytime lows that would result in "false" low A1Cs). So your daughter's A1C of 6.8 is definitely not a guarantee that she is not experiencing dangerous lows overnight. As far as parents at your support group meetings having mixed answers: I personally would not take comfort from that; knowing that other parents were not doing night checks would not in any way reassure me that this was a safe practice nor indicate that their children were not experiencing highs and lows overnight. The honeymoon period is not a time when a child does not experience highs and lows overnight; these out-of-range BGs can occur anytime during the life of a PWD. I don't doubt for a second that you care a great deal about your daughter and her T1D. I just believe you (and many other parents) were grossly misinformed by your endo/diabetes team regarding the need for nighttime monitoring. Do I think that CGMs magically "fix" everything? No. But I do know that my daughter's Dexcom has alerted me to all of the out-of-range BGs she experiences while I am sleeping, and I would never in a million years trade getting enough sleep for untreated highs and lows overnight. I can get more sleep when my daughter heads off to college in another 6 or so years. Until then, I will deal with sleep deprivation. Sleep deprivation is a pretty minor thing when compared to T1D.
     
  17. nebby3

    nebby3 Approved members

    Joined:
    Jun 5, 2007
    Messages:
    923
    My dd was dx at Children's Hospital in Boston and has received her care are Joslin in Boston for the past 11 yrs. We were told to night check initially just the first few weeks and then only when she was sick or had extra cative days. I do get the impression that thye are alot more favorable to nightchecks in the last yr or two as they have done their own CGM studies and seen the lows kids have. Certainly our old CDE who just left there knew we always checked and seemed supportive of that. I do think they will come around but change is often slow in institutions.

    Also my dd is 12 and began her period this year and there are times when her bg changes from high to low or vice-versa like flipping a light switch. I would not get too comfortable with puberty just around the corner.
     
  18. Beach bum

    Beach bum Approved members

    Joined:
    Nov 17, 2005
    Messages:
    11,315
    My feeling is this. You don't go 8-10 hours during the day without testing and getting an earful from the nurse/endo, so why would you not do it at night?
    I think that the docs felt that it was a way to give parents a break during those first few stressful weeks of diagnosis and because it was the honeymoon. We chose to always check and were glad we did. It definitely is a personal preference, but I just felt more comfortable. Now, we have the CGM and I can rest a bit easier at night…but just a bit.
     
  19. cdninct

    cdninct Approved members

    Joined:
    Jul 29, 2011
    Messages:
    888
    We were given the same advice at our large and reputable clinic, and I followed it without thinking when K was first diagnosed. I started testing him at night when he began pumping and we were told to check at midnight and 3am for a couple of weeks to get levels right. That was when I realized that good 8pm and 8am numbers gave me very little information about what was happening in between. K experiences wide and erratic fluctuations at night--more so than in the daytime. As a result, I test him more during the night than I do during the day much of the time (he uses a CGM, so I can get away with a bit less daytime testing). About a year ago we saw a different endo in our practice, and when I mentioned our experience she said that it was not as unusual as many people think. Conventional wisdom is that BGs should be stable at night when food and mealtime insulin are not being given; in fact, for some people, food and related insulin mask wide and unpredictable variations in metabolic needs, so things look great during waking hours and then fall apart in the night.

    I don't think people who don't check at night are sloppy or selfish or care less about their kids than those who check regularly. I am also willing to consider the possibility that some kids, for whatever reason, stay really stable during the night and might not need checks (and I think honeymooning kids can fall into that category--mine was on so little insulin for several months that he did). I think, though, that the only way you can be sure that your child is safe is to do a lot of night testing over a period of time to see what is actually happening. Unfortunately, missed lows at night could end in tragedy, and I can't handle that kind of a risk--it would mess with my sleep more than getting up to test!
     
  20. jenm999

    jenm999 Approved members

    Joined:
    Apr 30, 2014
    Messages:
    855
    This is the third rail of D parenting, huh? Shall we discuss breastfeeding or sleep training instead??? :)

    We too were initially treated at Children's in Boston and no one emphasized the importance of testing at night or what the consequences could be. We tested at night for the first few weeks and then slept through once we got a good picture of his nights. He was actually honeymooning hard and had an endogenous insulin surge around 3 am. So he was on only .5 Lantus for ages, with most of his daytime basal needs being met through boluses.

    Three months in we got a CGM and now we test when we go to bed, and later in the night if a correction was given or he was particularly active that day. Our nighttime numbers are much more conservative (correction factor, target) and when we make changes at night we go sloooooooowly.

    But yeah, we pretty much rely on our CGM to keep him safe at night and that's quite disconcerting. I guess I feel more confident in Dexcom than I do in my alarm clock plus a +/- 20% glucometer.
     

Share This Page

- advertisement -

  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.
    Dismiss Notice