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Going to endo and feeling a bit defeated

Discussion in 'Parents of Children with Type 1' started by chammond, Jun 19, 2010.

  1. chammond

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    We get to go to the endo again on Monday. In some ways I am always glad it's time to go so we can get some feedback, discuss his numbers, new approaches, etc.. The last 3 months have been a wreck. There is really no reason, a couple of colds, but nothing out of the ordinary, but I know his A1c is going to be high. Last appointment it was at 9, and I think it will be better, but not by much. We try for good control, but with a 2 year old everything seems crazy. He is stubborn, so we never know what he will eat, and have started avoiding prebolusing due to this. And I swear that when he sees us using the remote to give insulin he stops eating. Everytime. Its like his own little rebellion, sees the remote or feels the vibration, and he's done. Doesn't matter how hungry he is.

    And sneaking food. I don't remember my other son doing this. We can't even leave bread on the counter, he will grab the loaf, rip it open, and stuff his face. We don't deny him food, I think it is just more fun for him to see our reaction when he does it himself. He's almost big enough to open the fridge, so that ought to be fun.

    I am on this forum quite a bit, and read about kids having spikes into the 180's, and can't help but laugh and feel a little sick. I know he is little, his range is 100-180 so he is going to run higher than that at times, but sometimes it feels like all the time. Last year I was so on top of things with D, his numbers were better, but I seriously felt like I was going to go crazy, my life revolved around it. I had to let go a little or I would be no good to anyone. Now I feel like it's an all or nothing, but that isn't healthy emotionally for anyone in my family.

    Sorry for the rant, but maybe someone else is in this boat, and won't feel quite so alone. Managing D in infants and toddlers can be very daunting! Have a nice weekend!
     
  2. StillMamamia

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    I am sorry you're feeling defeated. D does that to us sometimes. It is so unpredictable. I think we all understand what you're feeling.
    I hope your appointment goes better than expected, and that you and your endo can come up with a few more strategies to work with. Just by experience, I'd say a few strategies work better than many at the same time.;)

    We have problems with prebolusing. My son will refuse to eat if I prebolus. So, we've made a deal that he gets some insulin before and the rest at the end. But he still has a hard time with the before part. I think it stresses him out, so we play it by ear a lot.:eek:

    Sneaking food is not an issue with which I've dealt yet, so I don't have any ideas for that. The kids have access to everything, but they have never taken without asking first, and we don't restrict anything we have. Maybe the sneaking will come. Ian knows he must test before eating, and so far it hasn't been a problem. (he was dx at 2 (about 3months before his 3rd b-day)

    But for a 2yr old, that's a whole different story. I hope someone will chime in with good suggestions.

    Plus they are growing so much at this age that you feel like you are always one step behind. There is no secret to this, except reacting to changes fast enough. I made the mistake sometimes of waiting too long before making changes, but sometimes that's the only way.

    Also overnights are really important to see if there are surprise highs going on.

    And testing 2hrs after a meal.

    I hope you'll be ok!
     
  3. chammond

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    Thanks Paula, I think that waiting too long to make changes is part of the problem. We always test 2 hours after meals, and he is uasually in the upper 200's to 300's with enough insulin on board to bring him down. I have also noticed recently that if we don't see that spike I freak out thinking he is going to go low. The thing I have to work on is realizing that a number in the lower 100's is good. It is hard because almost always he will go low afterward. Yesterday he was sitting in the 80's and I rechecked an hour later, 86, and I thought alright, yeah. Then 30 minutes later bg 38. I feel like he is never at a steady number, always climbing fast or falling hard. I did increase some of his basal yesterday, and hopefully that will help with overnight and late afternoon #'s. Knowing what needs to be done is sometimes the easy part, and convincing yourself not to panic can sometimes be more difficult!:D
     
  4. sam1nat2

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    Sorry you are frustrated.
    I also have a toddler, but she doesn't have D. I can just imagine how hard that is!! She has issues with dairy, I caught her moving a kitchen chair over, climbing up in the cabinet to get some chocolate (a restricted food)
    They are chalenging little people!!

    I hope that your endo is understanding and if not, try to find another one. For me, I don't feel that they do too much other than a1c. I know how my kid reacts better than they do to certain changes. I do the best I can but as we all know, sometimes D has a mind of its own no matter what we do.

    Call me a slacker, but we don't do endo apts every 3 months, often space out to every 5
     
  5. Mimi

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    I don't have a toddler with d so I can't offer any advice. But I am always amazed at the parents of toddlers with d...there are so many challenges with a young child and then to throw d into the mix...I just can't imagine. :cwds:

    Don't be too hard on yourself. I was like you too at first, living, breathing d every moment of the day. I had to let go some as well...I have other kids that need me to be a whole, happy person.

    I hope you have a supportive team at the endo's office that will understand.
     
  6. Sarah Maddie's Mom

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    I also think that as our kids grow into new phases in their childhoods, some of our D expertise becomes obsolete and suddenly we have to learn all sorts of new tricks because parenting a 2 year old with D isn't like parenting a 5 year old or a 12 year old. I know that this has always been tough for me ...

    Hang in there. You're really not alone :cwds:
     
  7. Christopher

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    You have gotten some good advice and support above, I will just add that managing diabetes is filled with peaks and valleys....sounds like you are in a valley now but will not be there forever....better days lie ahead....hang in there...:cwds:
     
  8. chammond

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    Thanks everyone for your great advice and understanding. We are very lucky to have an excellent endo and cde. They offer great support and advice and are never judgemental. As a matter of fact, we have to ask what his A1c is usually, our cde said because she doesn't want it to turn into a "report card". They tell us what improvements we can make, but understand that with little ones things are going to be fairly crazy. This board is a great place where I can voice my concerns and you guys actually understand what we are going through. Thanks!:D
     
  9. Becky Stevens mom

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    Chrystal I admire you so much! I cant even imagine having a baby with d. It was so hard when Steven was a pre-schooler. Its gotten a bit easier in some ways and harder in others:rolleyes: If you have a good d team then they know how hard this must be with a baby and will give you the credit and respect that we in here do for doing such a fantastic job with a 2 year old:) Terrible twos are such a challenge with a non-d child. I can just imagine what its like to add diabetes. I also read posts where people are upset about 180s or 200s and wonder what the heck Im doing wrong. Steven is over 300 at least a few times a week and has even had some 400+ in recent months. We all can only do the best that we can do with the tools we have now.
     
  10. mmgirls

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    I will come back later to post more, but, TURN OFF the vibration!

    Check and see if that helps any, prebolusing is with the ping allone brought down our A1c at least 1/2 a pt.

    I am happy to say that with the Ping, then CGM, then Apidra we have brought her A1C from 8.6 to 7.1 over the last 18 months.
     
  11. wilf

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    How much of his insulin does he get as boluses/corrections, and how much as basal?
     
  12. chammond

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    Right now he is getting about 40% basal to 60% bolus. His TDD is usually between 6-8 units. Some days it is more bolus because of food choices. I really do think if we start concentrating on getting more of a 50/50 split it will help with the spikes. I have noticed on the days that we have been lucky enough to get close to that 50/50 are his best numbers. All around his basals need to be increased, so we are slowly upping them, waiting a few days to see what's happening, and making adjustments. Right now he has a cold, so has been running high fairly consistently, but then will have lows out of the blue. He isn't eating as much as usual, so we are being careful with boluses.
    I also think that I am waiting too long to increase his basals as he is growing. Turning off the vibration is a good idea, maybe if we sort of "hide" as we are giving the bolus it could help. I think more than anything that the quitting eating and sneaking food is a game to him, trying to get the reaction from us. We have been trying not to react, hoping it will help, so we will see.
    Thank you everyone for the great help!
     
  13. Hollyb

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    If it helps any I have a teenager and get the same feeling when I see people talking about "spikes" to 180-200. Aaron's spikes are much higher, and with the amount he eats and size of his bolus, a reading of 180 2 hours post-meal does mean low at 3 hours.

    I remember soon after he was diagnosed thinking we would just be diligent and make sure he dosed properly and then he would always be in range. If only!
     
  14. StillMamamia

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    This is a really hard thing to accept. That spikes do happen. Of course, we try to minimize them, but, unless one eats no carbs, they will happen, at a lower or higher level for everyone.

    It's also difficult to explain to those who don't live with T1D how 1hr after a meal, BG will not be in the 80s.

    It takes a while to get over the guilty feeling and just find new ways to minimize those spikes.
     
  15. wilf

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    Giving him more of his insulin as basal will help with the spikiness.. :cwds:
     
  16. Lisa P.

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    If you can't prebolus you can't prebolus. And if you can't prebolus, with a tiny kid IMO you are always going to see a spike into the 300s with any meal with any carbs at all. Period. You have to see that 300 at 2 hours, or you will see a 40 at the end of four hours. I banged my head against the wall a long time before I accepted that this is the way it is, that's just the math and physics and chemistry of it, and I can't change the laws of nature. :eek:

    Now, some day you may be able to prebolus. Or your kid will get bigger. Or he'll be an adult and be able to go lower carb. Or there will be a cure for type 1 diabetes. And that day, you won't see spikes of 300. Just because something is true now doesn't mean it will be true forever.

    Also, spikes are spikes -- they are pointy. It's good not to stay at 300 for five hours, 15 minutes at the top of that mountain and then take the trip down again is different. Not ideal, but what is ideal with diabetes? Nothing. It's the best of crummy options we are shooting for. And sometimes don't make that.

    Now, how does he feel at 300? Because Selah, I've discovered, is an entirely different and Hulk-like creature over about 180. That drove us to risk lows more by pre and overbolusing (getting the CGM helped, too) because she wasn't just spending lots of her day over 300, she was spending lots of her day feeling crummy. So, it was worth it to us to risk erring in the other direction. Each person will have his or her own balance sheet on the risks and benefits of running higher and lower, prebolusing, all the rest.

    Of course, you probably already know all this, but I hope it helps you feel a little better to hear another obsessive mom of a little kid saying we take trips into the 300s more often than we take trips to the store. . . .
     
  17. czardoust

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    Katerina was 3 when she was dx'ed, but I'm not going to offer any advice because if your childs average range is in the 100's, your doing awesome!!!! That will produce an A1c way better than kat has ever had......
     
  18. chammond

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    Right now the meter average says 216. With that said anytime there is a number above 300 we usually retest, sometimes twice, and this is nearly daily lately. So that may not be entirely accurate. There are specific times during the day that I know that his numbers will almost always be high, such as before bed due to the dinner spike. I am really glad I posted this because I have gotten some really good ideas, and feel like our appointment tomorrow will be positive. It is funny how airing our feelings can sometimes help to make us see possible solutions to our problems. Thanks everyone!
     
  19. ShanaB

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    Emma just turned two and we are more of a 65/35 bolus to basal split. My Endo told us that with the little ones the 50/50 doesn't seem to hold true. We are always tweaking but I know that ratio is about right for us because if she decides she's not going to eat (which seems to happen lately...toddlers are so unpredictable) she will not go low. If we were even close to 50/50 she would bottom out fast. Just saying that I don't think little ones always follow "the rules".

    We are also suffering through spikes, strange lows, weird eating patterns, and power struggles. Keep your head up and know you aren't alone :)
     

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