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Letting our kids be kids

Discussion in 'Parents of Children with Type 1' started by Lisa P., Aug 19, 2008.

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  1. Lisa P.

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    Rather than hijacking another thread, thought I'd post this here. A poster brings up a very good point and one that I think we're all concerned about.

    I worry a lot about whether I'm being obsessive to the detriment of my child. A lot. Really a lot. But the fact is numbers for us (and I imagine for many) is not an abstract game, or even just a matter of complications in the future. When her numbers are wonky, she feels bad. Really bad. Really, really, really, really bad.

    She's two, so things will change as she gets older. But right now she doesn't complain much at a finger stick, in fact she jokes about it. But when she has numbers over 300 (I know you qualified that you are talking about when kids are in target, but this is what happens if I don't obsessively log and test and adjust, and sometimes happens even when I do) she is out of this world, out of her head miserable. She screams, nothing can comfort her, she is hungry and she is thirsty and she DOESN'T UNDERSTAND. She doesn't know it will pass. She's in the moment, and the moment sucks. So any information anyone can give me regarding what foods help her feel good, what strategies keep her in target range, all those letters and numbers, I'll take it.

    And I'll try hard to let her be a kid. And she can have cake. But if giving her a big old chunk of frosting right before bed just because everyone else is having it means she will be up seven or eight times in the night and tired the whole next day, I'm not trying to steal her childhood by saying no. I've just decided to define "normal childhood" as the good and loving childhood I want her to experience, not as a childhood that is identical to that of her peers. Like that even exists, anyway.

    Which is not to say you can't manage diabetes well from instinct instead of math, everyone does it differently, but I'll steal help from any direction I can get it.

    That's not flaming, is it?:p Not wanting to flame, just to carry the conversation from my point of view.
     
  2. MamaC

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    That is totally NOT flaming. That is good, sensible talk.

    Assuming in my sleep deprived state I can still recognize good, sensible talk.

    Hey, I'm the one whose kid was on a surfboard in between fever bouts. How's that for letting him be a kid?
     
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  3. MrsBadshoe

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    I agree. Parents get too wrapped up in the Number and controling the number. You lose the kid in the Number. The kids need to be kids, that's how they survive this into adulthood and become competant and successful adults. I would love to follow many of these kids with over controlling parents when they move out of the house. Do they just give up and not test at all and end up in DKA or do the ramp down the testing and just get sick periodically or do they stick with it. It reminds me of the kids whose parents never let them off the leash at home...when they got to college all hell broke loose and most ended up in trouble at some point.
     
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  4. Nancy in VA

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    I definitely spend a lot of time trying to make sure that we aren't letting diabetes take over our life, or define our life, just be integrated into our life.

    I used to test about 13 times a day and my Endo was worried about that. She actually said that yes, the nurse would LOVE that amount of data because she can analyze it, review trends, and make recommendations, but that she as the Endo had to try and treat the whole person and not just numbers.

    We have backed off testing a lot. We test about 8 times on average a day. I cut out all of the tests that I knew I wouldn't do anything with.

    For example, unless she eats pure sugar for breakfast, her 2 hour number isn't going to be in range, but will be less than the IOB that is left, so she rarely if ever would need a correction. So, I cut it out and now only do the 3 hour check.

    I also stopped testing her during her nap in the afternoon, even though her 2 hours (and sometimes her 3 hours) comes while she's sleeping. I just test her when she gets up.

    I do test more when something starts to act weird or I'm trying to track a trend, but when that is done, I cut back again.

    And, even with the reduced testing we brought our A1C down from 7.8% to 7%

    And I feel much more like diabetes isn't controlling our life!
     
  5. mickey's mom

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    I think that managing Diabetes is like anything else, it's all a matter of what you are comfortable with. My daughter was diagnosed at 8 yr old, which from what I have read on here is a lot different then dx with a toddler. Honestly, if she is high, I correct, if she is low, I treat, if she is "normal" woohoo, we celebrate. I spend a lot of time guessing what carbs are in food, and I think I am pretty accurate or so the numbers say. When I read in the other threads about weighing the corn and multiplying by a number then weighing again, wow I have never even thought about being that accurate, in fact, I never even thought about the possibility of being that accurate. It doesn't mean that I am letting Michayla be more of a child, it means that my personality is different then yours and I fly by the seat of my pants most days.

    Do what makes you most comfortable with your child, you know her best :)
     
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  6. StillMamamia

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    I agree with letting kids be kids...however, the thought of not being 'rigorous' enough is always in my mind. Worrying about what negative consequences that may entail for the future. I know we can do our utmost best, and what the future holds is beyond our grasp, but how do you reconcile 'letting kids be kids' and 'strict d-management'...that's what I would like to achieve.
     
  7. wilf

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    I thought the quote that prompted this thread was maybe overstating things to make a point..

    We all as parents do our best to manage the D in the context of our own children and our families. I think as long as we all try to keep in mind that what works for our own family may not be quite appropriate elsewhere, then it all works out. YDMV!
     
    Last edited: Aug 19, 2008
  8. caspi

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    That was all I was trying to say, Nancy. Thank you for clarifying! :cwds:
     
  9. StillMamamia

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    Slight highjack, sorry...

    Wilf, it may have sounded overstated, but that's just my way of writing, but it is exactly how I feel. Like I should be doing so much more, and the feeling of inadequacy is real. For instance, I did some overnight basal testing recently, everything went well. It confirmed my suspicion that Ian was having highs during the night, which went undetected, so I increased basals. Everything was going ok, and now I'm finding myself with lots of lows. Despite doing testing, and trying to figure out when and where to tweak, I'm still failing. That's how I feel. What else can I do, except turn to math and equations and stricter monitoring? I want what everyone wants for their children...stable bgs, great A1c, very little glucose variability and the relative peace of mind that comes from knowing you are able to control 90% of the variables.
    Thanks for reading.
     
  10. MamaC

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    Not failing. Failure is what happens when you don't try. Trying and trying and trying till you get it right, or closer to right, is succeeding.

    It's a process. There's a goal, but there are lots of ways of getting to it.
     
  11. OSUMom

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    I don't think I've read the other thread that is being mentioned. I can't keep up with everything here! :p I have thought before how the transition will go for many from childhood to teenage time to the young adult phase. I have this theory "that which we fear the most, we attract" as far as behavior goes. I really believe parents here do an awesome job and are open minded. I see moms and dads here constantly reassessing and staying open to how they can best care for their kids. Well done everyone - just know as the teenagers grow their self care may differ slightly than what your expectations are - but ultimately they most likely want a long life for themselves just like you want for them as well. :cwds::cwds:
     
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  12. selketine

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    I figured I would stay out of this conversation as I'm a supporter of YDMV. However I think some are being made to feel bad because they test their kid "too much." If you can get by on 5 tests or 8 tests a day - more power to ya!

    William was dx'd at 26 months and on NPH and it was like a roller coaster. He could not tell when he was low (and only recently does he seem to catch some lows and he is 6). He would go from the 400's to 70 in 30 mins .... I know this because I tested him. This drop (on NPH) was completely unpredicatable too. He was so sensitive to insulin it was almost impossible to bolus him right (with diluted insulin even). I tested him 20 times a day back then. I don't know what the other option was....letting him go too low repeatedly I guess. He didn't mind the finger sticks - he had a great childhood IMHO.

    He is pumping and has been almost 4 years. His numbers started going wonky again about 16 months ago and he goes through periods of needing combos for all meals or some meals - no rhyme or reason - no consistency - not always the same meal or the same length of combo. Or he suddenly needs less insulin overall - for a week or more. It isn't the insulin, his set, the pump, etc. He has some absorption issue but he doesn't have celiac. No one can figure it out. I am meticulous (at home at least) about weighing his food. I've probably had a Salter scale for longer than most here. Same breakfast today as yesterday - woke up at the same time at nearly the same number to start. Everything the same - bolused him the same amount with the same short delay before he ate. Today is he was 57 immediately after eating - yesterday he was fine. Why? I have no idea. What do I do tomorrow? I don't know. I guess I will just have to test him after breakfast to see if he needs a combo at the moment for that meal.

    It isn't like I'm trying to keep him in some tight range either....believe me.

    Is he unusual? I don't know. I don't particularly like to post about his problems and how much we have to test him still because I don't really care to have a conversation about whether this is appropriate or not. I think the trend is towards the CGMS which gives more info than any of us currently have who rely on finger sticks. Many who have kids on a CGMS talk about how amazed they are that their child was having lows or highs they never knew about.

    I think you have to do what you need to do - and you know your child best. If it is to test 5 times or 15 times. I wouldn't trade William for anything but you are welcome to walk in my shoes with your own child for a month (or a year) and see if you still feel like testing less is "letting your kid be a kid".
     
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  13. jules12

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    selketine - thank you for sharing your perspective. I think it is easy to see what someone else does and question it - either good or bad - sometimes I feel intimidated because I don't do all the things someone else might do but I know I do the best I can - that is all we can ask of ourselves. No one knows my kid better than me. We all deal with the ups and downs of this disease and this may not sound right but sometimes it can make me feel brilliant when I get a basal change or ratio right on the first try and other times it can make me feel very inadequate and stupid!

    More importantly, have you played a game with your kid or laughed or had fun recently? if not, make sure you work that into the schedule!
     
  14. wilf

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    Oh gosh, Paula, I was not referring to your post - but to the quote at the top of this thread..

    And certainly you're not "failing", just struggling as we all do to do the best we can with a very unpredictable condition. As a scientist I agree with you and I believe that there is a place for using scientific knowledge to better understand the diabetes (and especially the insulins and how they work) to make the D easier to manage.

    To my mind education is the key. I was lucky enough to get extraordinarily good training in D management when DD was diagnosed - but I've seen to my dismay that such training is very uncommon, and that most families are left to fend and learn for themselves.

    ****

    For the record, we have great A1Cs at this end - but there is variability in BG numbers every single day. The only days when BG is stable with no variability are when DD is sick and not eating..

    We parents can not expect to seamlessly take over the functioning of the pancreas and replicate its extraordinarily complicated and efficient interactions with the rest of the endocrine system. We can just try to learn what we need to, to be able to manage the D in a way that works for our families..
     
  15. zell828

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    I think you can have tight control and still let your kids be kids. My SD is a very happy little girl and we don't let D control us. We get out in the world yet and do our family things, take the kids places, let them be a kid and have fun. We don't say no to things kids enjoy or foods. We do have limits though as every parent does with their child. I educate my SD on D and let her know that while you can have a "normal" life, you can still take the best care of yourself you know how and are capable of doing. You can do both. It isn't one or the other in our home. It's living with D and being happy and healthy in the process. We combined the two :)
     
  16. ScottB

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    Too many variables for me to make an unbiased call on this but I must say letting a kid be a kid is first and foremost to me because they'll only have 1 chance at it where it will be OK to be a kid and I want our boys to be able to look back at their childhood with a smile. The main reason we got Justin a pump was to allow him to live as normal a life as possible. However I'm not so naive to realize that many of you have children who have a high sensitivity to insulin which requires you to test more often than Justin does and with that in mind, I'm in no position to criticize which is where YDMV comes in.
     
  17. lil'Man'sMom

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    Okay, here I go...

    The question should be; Does the way you manage diabetes allow your kid to be a kid? If the answer is yes, then GREAT job, if the answer is no, then look for an alternate way. If the answer is maybe, then welcome to the life of diabetes.

    Do I feel inept at times when I test less than Marsha, WILF, Kim? Do I feel like a fanatic if I test more than ????????? (cant name anyone)? NO. I am testing for what my child needs, whether it is 5 or 20 times per day, I test and that is all that matters. I can't, nor should anyone else, beat themselves up for TRYING to manage this disease.

    As for the zee brainz or the creative or the sympathetic hugger or the newbies or the lurkers; while we are all different and offer our own style to diabetes, we are all parents to CHILDREN WITH DIABETES.

    my honest opinion (no acronym)!;)
     
  18. MamaChrissa

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    Jason is definitely a kid first! I try and think of it as D has us doing more things to/for him....but does not stop him from doing anything. But if there is no reason than D for him not to have that treat, then it is my job to figure it out. Ive been working for months to properly bolus for that extra piece of cake or ice cream. I will get it eventually! ;)
     
  19. lil'Man'sMom

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    BTW - I am off to bake some yummy bran banana chocolate chip muffins. Super high in fiber, but lots of chips to make them yummy. BALANCE!!!

    Manning loves them :D.
     
  20. andeefig

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    I think we went to the same school of life. This is precisely how we manage D. The numbers and A1c prove that we're in great control, and D isn't always a big deal, so it works for us. I'm sure those who analyze alot of data feel the same way about their method. Hey, whatever works! Like I said in the first thread that prompted this one....charts and graphs make me want to puke on my shoes.

    So, Mickey's Mom, you're not alone. :)
     
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