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New Here! Am I too relaxed?

Discussion in 'Introductions' started by mamattorney, Apr 9, 2013.

  1. mamattorney

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    Hello everyone! My 10 year old daughter was diagnosed with Type 1 about 4 weeks ago. So far everything is going really well.

    I've been reading this board for about two weeks and I have to say, it's a little unnerving as I read posts on this board with people being up multiple times a night to test their child and worried about their children being away from them.

    I now feel like we are not taking this disease seriously enough.

    The Diabetes educators were great (I think) in the hospital and their philosophy was that the disease needs to fit into your life, and to just take things one meal at a time. We only tested her at 2:00am for the first couple of nights, and then a couple of times when her blood sugar just seemed to be tracking lower than I liked when she went to bed. More recently, I just make sure she's over 120 at night before she goes to bed, giving her apple juice or a snack as necessary. One time she woke me up saying she felt kind of bad, but she was still OK - in the 90's. She had a snack and went back to bed.

    Admittedly, my daughter's been very agreeable about the whole thing, never refusing a shot or a request to test, but we also have not yet had a significant low (60's only), so now I feel like I'm just waiting for the other shoe to drop, so to speak. Is she suddenly going to refuse to take shots? Is she going to pass out somewhere from low blood sugar?

    So far, each little baby step has worked out well. From going home to a friends house after school (just packed a non carb snack for her so she wouldn't have to worry about insulin), to being left with a babysitter 2 hours before her usual dose of Lantus (Nurse just said, give it before we leave or after we got home - our choice), to the first meal out at a restaurant with no nutritional information, and that first odd meal at home (Easter - grazing with appetizers, meal prepared in pot luck way with many unknowns), to watching her give herself her first shots (just happened this week). Everything has worked out fine. She ran a bit high on Easter, but we corrected at bedtime and moved on, just like we were taught. Her next baby step will be a sleepover - I know her best friend will having a sleepover b-day party in late April. We'll just take it as it comes, I suppose. Same thing with our week long trip to Disney in June. We'll just take it one finger prick at a time, and work with the numbers. Well, at least that's the plan.

    I almost feel like we're doing something wrong. I get so much sympathy from people about how awful it must be, but honestly, it's more of a hassle than anything else. Maybe that will change when summer comes and life is more different on a day to day basis. Am I just naive?

    ** sorry to use this intro thread as my own personal blog. I've just wanted to get this off my chest. Mother's guilt and all that . . .
     
  2. nanhsot

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    Welcome, glad you found us, even feeling relaxed I imagine there will be things you will learn from the wisdom here.

    I think everyone has their own journey, yours may well stay relaxed, I hope so! I kind of think that being diagnosed older can be both a little harder (hello hormones!!) and easier. Easier in that they understand what's happening and can take control quickly, I know my son (dx at 15) did. Harder in that the teen years have their own kind of crazy and being diagnosed in the tweens/teens at an already crazy time just adds another layer of stress.

    I'm assuming you know about honeymoon, right? Part of the "easy" of the early days is that the pancreas work with you to keep things level, so that certainly helps too.

    Here's to a long and strong honeymoon, and continued relaxation on your part! Do your research NOW on how hormones will affect things, for my dd (nonD) hormonal fluctuations started around age 10 and were fully in bloom by age 11, so knowing how that may affect her blood sugar will only help you when that time comes.
     
  3. Beach bum

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    Hi and welcome.
    Yes, diabetes is awful, but it is also a hassle and at times a royal PIA!

    It's common practice for newly diagnosed families to be told to check for the first few weeks during the night and then stop. I never understood this. I always say, if you don't let them go that long without checking during the day, why would you at night? Diabetes is 24x7, it doesn't sleep when your child does. You have to take into consideration activities that your child does later in the day. They will have an impact on BG's at and during the night.

    Things probably will change in the summer, she will be on a different schedule than school so insulin needs may vary. You have to take it one day at a time and see how it goes. We usually know about 2 weeks in how things are going to shape up and how we'll have to make adjustments. I think the best way to approach D is in baby steps, you cheer your success, you work on things that didn't work. Things will leave you scratching your head too.
     
  4. KatieSue

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    We're also a bit more relaxed and one test at a time. I agree with Nan that being diagnosed older, mine was 13, is a bit easier and harder with the hormones.

    My kiddo did a sleepover less than a week after diagnosis. She was fine. We went out to eat and guessed, corrected and went on. We don't always guess right and she's scared the crap out of me a few times with lows. The first time we got the HI reading on the meter I literally ran full speed across the street to her Dads. The second time we knew what to do and it wasn't as stressful.

    I don't think it really gets easier but I think, at least for us, it's gotten less stressful. You kind of trial and error figure out what works in different situations then the next time it happens you're more confident in what to do.
     
  5. mamattorney

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    Thanks everyone.

    She started her honeymoon within 2 weeks of diagnosis. She had been running really high so that her 1:15 ratio when she left the hospital was slowly changed to 1:8 at breakfast and 1:10 the rest of the day. Then all the sudden, the bottom dropped out of her numbers.

    She's now back to 1:15 all around, but she has to have a lot more snacks now (she tests before she walks home from school and before bed, which normally wouldn't have any food associated with them) because sometimes her pancreas produces a ton of insulin and drops her down.

    I know the honeymoon is the best part of a Type 1's management; I hope it lasts a long time.:)
     
  6. MomofSweetOne

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    I think there's a hard-to-define line between too relaxed, too intense, and cautious because of reality. My daughter DOES. NOT. WAKE. to nighttime lows. I didn't know this at one month in. At that point, we were still checking once every night because of directions at diagnosis. At that point, I was longing for the nighttime checking to end. At the six week mark, we were given 5 criteria for required checks. They just didn't tell us that virtually every night would fit into one of those criteria. In 2.5+ years since diagnosis, I've slept through the night three times. When we switched to the pump, we were then instructed to set an alarm every single night despite having a CGM. There are nights I've found ?? and she's been low, so I continue to follow their directions. I also turn off the alarm if the CGM has already alarmed for some reason. It's a balancing act of my health vs. hers. Mine is losing.

    I know a family that has never night-tested. Ever. They think I'm too uptight about diabetes. I think they're too relaxed. The amount of damage done in 10 years due high A1Cs to their daughter...I have a problem with relaxed when someone else is reaping the damage of another's choices. I won't do that to my daughter. Whether she chooses tight-control when she takes over is her choice. For now, I intend to hand her over to herself with the lowest risk of complications I can reasonably manage.

    I also have the emotional baggage of having a sibling that seized and was left with a permanent injury from the seizure. Seizures are real. They are scarey. To me, checking and CGMing at night is worth it to avoid them. Puberty is insane. Last night, 15 g brought my daughter...lower. She was in a very fast basal needs drop, and I had hesitated to give her 30g uncovered at once. I should have; I knew from prior experience, but I didn't. I dropped her basal by .75 units PER HOUR in addition to the 30g and she was at 106 this morning. That's why I don't relax about nights and why we both CGM and check. Most of the time diabetes becomes routine and part of the landscape of life, but if you get too laid back, the risks are great.
     
  7. StacyMM

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    I think you might just be unusual in that you found a board when you weren't worried :) We've been dealing with diabetes for almost 7 years but didn't seek out any forums until years later. We were doing fine and figuring it out was went along. The things that made us nervous (unexpected naps in a car, finding a daycare provider, etc) were things we just dealt with and it never even dawned on me to see what other people were doing. I'm not sure how I found the site, or what led me to register, but it worked out well at the time. We're a laid-back family and this is an info source for me so membership is nice.

    I will say, too, that I have a recently diagnosed tween (diagnosed in December at 10, now turned 11) and it's been so much easier than with DD (who was 2 at diagnosis). I think that if I had started the diabetes fun with him, I would be convinced that being a pancreas was much easier than it really is. He's in a honeymoon, he's old enough to understand what needs to be done, he can use a phone to call us, he's in school, etc. I realize that we're lucky in that his honeymoon is smooth and his insulin needs are fairly consistent, but I'm loving it. I figure it will eventually wear off but I plan to enjoy the more relaxed approach we can use with him. I think you should do the same - enjoy this stage. Do your research, read the books, be prepared for what's coming (puberty) and keep doing whatever works for you!

    Oh, and I wanted to comment on the night-time checks. It seems to pop up periodically and there is a poll or a post about checking at 2:00 or not. You aren't alone. We don't check every night. We do check at times, but our 11:00 check is regularly the last check before 6:00-7:00 wake up. We spent a year waking up early every day to treat DD's dawn phenomenon (when she was on MDI) and I'm so happy to be pumping so I can sleep in an extra hour or two! If numbers are good, activity was normal and there is no IOB, we don't wake up in the middle of the night.
     
  8. obtainedmist

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    I've got to say that we never checked Molly at night after dx. Granted, she was 17 at the time and we weren't told to do so...but it was an eye opener reading the forums here and seeing how other parents checked. I'm sure I would have approached the whole thing a lot differently had she been dx'd as a toddler and non verbal or a young child and unaware of their body. It's great that you are relaxed and learning as you go. It makes everyone happier. Our daughter was always the relaxed one...she once told me, "Mom, if you had T1, you would drive yourself crazy trying to be perfect!" Ha! So true!
     
  9. Tricia22

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    Don't let anyone tell you what's right for your family. Only you know what is right for your lives. I never tested at night unless making serious changes to insulin, was ill, had surgery, started pumping, etc. And I've lived 18+ years with the disease!
    As a wise parent of CWD says, YDMV - Your diabetes may vary! How true that statement is! What works for one family might not work for yours and vice versa. Be open and honest with your diabetes team about what will or won't work for you, and really just try to live as normal of a life as you can despite the suck that is diabetes. I don't let diabetes rule my life or be my life, I live my life WITH diabetes as a PART of it, not as the whole.
     
  10. Lenoremm

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    Everyone is different and YDMV. DS was also ten at diagnosis so we did not have the issues families with little ones frequently face. We have had our own issues. Not everyone finds it helpful to them to check every night but we do.

    DS is in the middle of puberty now and. . .

    We have found him dangerously low (30's) and uncomfortably high (300's) during our overnight checks. We would not go eight hours during the day without checking so we are uncomfortable going that long overnight. Many things happen to kids while they sleep that can and do affect their blood sugar. Lately we find we are actively managing (not just checking) overnight. Growth spurts cause high blood sugar and highs that run too long are stubborn to treat. Waking with a high can set us up for an entire day of high blood sugars. Waking with a low can mean throwing up breakfast and chasing lows all day.

    In some ways it is easier to manage during the day if we manage overnight.
     
  11. pianoplayer4

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    Everyone is different, and not every one checks every night...Honestly you're going to start seeing how your dd's diabetes works, and how different it is from other people's

    We never checked EVERY night, but we often checked at night... it just depended on my #, and what I'd been doing all day... I found that with lantus I rarely had stable bg's over night... and so I had to be over 120 to go to sleep, and check most nights at 2am. But that's just me=) you'll find the balance between keeping your dd safe and not letting 'd' ruin your lives... and everyone's balance is different=)
     
  12. SandiT

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    As others have pointed out, I think it depends a lot upon "your" diabetes. Your daughter's diabetes seems to be fine with your relaxed view. You know the numbers and thus you should be the one that makes the call of whether or not being relaxed is safe for your daughter.

    Oh, and being 9, she can understand better than the younger ones. I wouldn't expect her to start fighting the shots, she's old enough to know better.

    You just can't reason with a 3 year old... and you can only barely reason with a 6 year old, lol (or at least, we can only barely reason with OUR 6 year old).
     
  13. jellybeanasmommy

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    My DD is 9 as well and was just dx'd 2 weeks ago. I was freaking out and micromanaging things the first week home, but this week I've gotten a little more relaxed with things as they've become "routine". We also saw some major highs last week because she had to be taken to the ER a day after her hospital discharge because she broke out in terrible hives multiple times and they gave her steroids (dexamethasone, which works over several days with just 1 dose in the beginning). We just had our first follow up appointment with her endocrinologist today and the dr seems to think that we are just now starting to see her "real" numbers without the steroid. The lowest she's been so far is 73, and that was today after she was running around the park for an hour and a half. She had some french fries (with insulin) prior to going to the park and had I realized she was going to be there so long I may have given her a little less.

    Anyway, it wasn't a "true" low, but it was a couple of hours until dinner and I knew she would just get lower so I told her to chew a glucose tab (4 g of carbs) to boost her up a little until dinner. Then we dosed as normal for dinner. Her dr has her "goal" BG at 100-200 right now and I've found that she goes up about 10 mg/dl per 1 gram of carbs from sugar/glucose. Her endo emailed me after our appointment today to remark on how well we seemed to be coping and she was impressed with what we knew already. Our visit ended up only being about an hour and a half and she said that was really quick for a first visit (we met with the dietician and the endo today). And a lot of the questions that I asked both the dietician and the endo were like "Uhhh... You seem to have a pretty good handle on this just do what you've been doing".

    We were also told that we don't have to do 2am checks anymore as long as her BG is above 120 at bedtime since her BG has been trending high overnight (around 250 most nights) but then is back down in the mid or upper 100's for breakfast.
     
  14. hawkeyegirl

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    I can tell you that if you do not check regularly at night, you WILL miss lows and highs. It just depends on how comfortable you are with that knowledge. I would never not check at night (we actually have a CGM who does the checking for us), but opinions vary.
     
  15. mamattorney

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    I'm sure I'm missing something by not checking at night, since her BG is constantly changing, but the question then becomes: how do the nighttime changes affect her physically, how do they affect the next day, and how do they affect her a1c/ potential for complications.

    While I know it may not be popular on this board, unless absolutely NECESSARY, I will not subject my child to a lifetime of disrupted sleep. I've had three kids - I know what disrupted sleep can do to someone after an extended period of time. She needs sleep; her job is to learn at school and I'd prefer her running at 100%, not 75%. She and I both hate testing overnight - it always seems to take more than one finger poke to get blood and when it's done, we're both awake enough to make it not an instant return to sleep (she'll have to use the bathroom, etc). She's tired and crabby the days after the nights when my gut says to test overnight and so am I.

    If at our next appointment, her a1c is nowhere close to what her average BG is according to our meter readings, then I'll discuss the options with the team. But, if it's relatively close, then I think we'll keep doing what we're doing, evaluating as we go.

    Perhaps I will re-read this post in 12 months and think - "Oh boy, were you naive" but I truly hope not.
     
  16. KatieSue

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    We don't do night checks unless somethings up. She's been on a CGM for a month now an honestly I haven't seen anything alarming at night. Maybe we're just lucky.

    Do what's right for you and your family. I know there have been weeks where we have needed to do night checks and we end up just thrashed by the end of it. I do it when I think we need to, even sometimes when I'm not 100% sure then I'll check. But we can go months without one. Then have to do them a week or more at a time.
     
  17. cdninct

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    I understand where you are coming from entirely. For the first little while, middle-of-the-night BG checks did the same things to DS, and they did affect him the next day. It was not long, though, before he stopped waking up all the way, and now he does not stir at all. I could turn on the lights, pull back the covers, sing the whole time, and check every one of his fingers twice, and he would not budge.

    It's like having a grandfather clock or living by train tracks. At first, the sound drives you crazy, but when you get used to it and when your brain knows the chimes or whistles are coming, it tunes them out--unless something unusual happens.

    Testing at night is a personal decision, and you may decide that it is not something that you are willing to do, but please do not discount it because it causes disruption at the moment!
     
  18. nanhsot

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    It is clearly a personal decision. We only night test when indicated...illness, high levels of exercise, wacky numbers, stubborn highs or lows, etc.

    I would personally just keep the door open as I think there is some danger in developing a negative mindset about this. If things stay level, more power to you, but a more likely scenario is that things will change as time goes on.

    It does get easier; you develop a routine and find tools that help (for example I use a little book light).

    CGM is a valueable tool and has really shown us more about what is happening at night. It's easy to believe that nothing much is happening during honeymoon as the body works hard to bring them to 90ish by morning. Enjoy it while it lasts, but know that eventually things will likely change. Waking up high is much more difficult for my son than being woken at night. As far as how it affects overall health, that depends on how much time is spent high/low, and that will vary once honeymoon ends.

    My main advice is keep the door open, as it may be necessary at certain times. There are lots of tricks to keep things from being disruptive at night and lots of stories of people who thought things were level until they spot checked a few times.

    YDMV of course.
     
  19. MomofSweetOne

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    When I was at your point, post-diagnosis, I was just waiting for the 6 weeks of required testing to end. Now we're told every night, even with CGM.

    Puberty will come soon for your daughter. For us, we had 1 year before the hormone swings became intense. It first showed by her needing no Humalog for several weeks and her Lantus dropping in half. I was up feeding her honey every two hours during that period. It was then that I decided we needed to add a CGM into our approach because even between the two hour alarms, I wasn't sleeping well, wondering how fast she would be dropping.

    Now, my daughter's basals change very fast and often in the middle of the night, but never at a consistent time. We're talking about a beautiful 120 or 130 can become a low 60 within 45 minutes and her basal needs can change by a unit per hour that fast. A night or two later, she can need the opposite and I'm fighting 250s. Those nights I'm glad for the alarms that help me prevent her going even higher. Once she hits 200, it's extremely hard to get her down, and if her basal needs are going up fast, it's astronomically harder if I'm not upping the basal agressively. I'm up a lot at night. I'm told nights will calm down in 2 - 2.5 years. Somedays that seems a long time off. I don't like getting up at night. I actually got a 6 hour stretch (misset the alarm) yesterday and then two four hour stretches last night. I feel alert today.

    There are times I'm tempted to run my daughter higher - and occasionally I do so that I can get a bit more sleep - but if you read the studies Darryl lists on his signature - I think keeping good BGs during the night is a pay-off that worth it. Our daughters will have this disease for years. I don't want my daughter's dreams affected by retinopathy by her 20s, etc.

    You mentioned wanting your daughter to be at her best, and so do I. I can tell by the sound of her footsteps in the morning how the BG was through the night, even without looking at the CGM. I also see it in her focus on her schoolwork. The difference between a 120 and a 190 is HUGE.
     
  20. Christopher

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    Yes, you are most certainly missing something. You are missing 8-10 hours of bg readings. For me, there are SO many variables that effect bg levels, that I can't just go to sleep and hope for the best for those 10 hours. As to your questions, I do think what happens at night has a big effect on all the things you mentioned. I find that if Danielle wakes up with a high bg, she usually has higher bg's the rest of the day and it is harder to bring her down. I also believe that if a child is high most of the night, that is going to negatively effect their overall A1C and long term health.

    You won't be subjecting her to disrupted sleep her entire life. She will become an adult and move out eventually. So really, you only have another 7 or 8 years where she will be with you. Once she is an adult and on her own, she will have to decide for herself if she is going to set an alarm and check herself at night.

    You are in the early days, and they are very tough. I still remember them vividly, even after 6 years. And while it may be disruptive now, I bet that as you both get used to it, it will not be disruptive at all. I remember in the first weeks, even a month after dx, Danielle would wake up for the bg checks and be screaming and crying. I couldn't imagine how we were going to live like this. However, as time passed she started sleeping through the finger pricks, even sleeping through correction shots, so there was little to no disruption. I can be in and out of her room in under 30 seconds to do a bg check. I use a headlamp so I don't need to turn on any lights and I use a Delica lancer to minimze the pain. The most dangerous part is navigating the obstacle course that is her bedroom floor.

    As others have said, testing at night is a personal decision. My feeling is that the more time I can keep her in range, the healthier she will be. I have caught many highs at night and then I correct them so she wakes up in range and feels better throughout the day. I have also caught many lows, and the risk of what could happen to her if I didn't catch them more than assures me I am doing the right thing for her.

    So I think eventually your daughter will sleep through the checks and it will not be disruptive for her. For you, on the other hand, it is going to be tough. There are many days, especially after a long night where I only get a few hours of sleep, where I am very tired during the day. But I tough it out because I know I am keeping her safe and healthy. I also know that eventually I will get back to sleeping at night once she is gone. (well, maybe :eek: )
     
    Last edited: Apr 17, 2013

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