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Parents at the end of our rope and desperate - very long read, sorry

Discussion in 'Parents of Children with Type 1' started by DadTheImpaler, Jan 31, 2015.

  1. missmakaliasmomma

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    I don't have ny experience with adhd but I was under the impression it didn't make someone mean.. With how you say he's acting, are you sure there isn't something else going on like depression or bipolar? Again, not in your shoes at all but life is hard at your sons age is hard for them with all those hormones and craziness without throwing D in the mix too. He may benefit from talking to someone if you haven't done so already
     
  2. sszyszkiewicz

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    if you take away the phone, you take away the means by which you havea chance of knowing the numbers. he will not be able to text you.

    its only the first day.
     
  3. kiwikid

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    My daughter dislikes the EZcarb... and she absolutely hated the Animas Ping- 20/20 pump with the dial up bolus....its just takes too long. She will bolus in units.. Maybe letting him bolus units would help? To me anything is better than nothing. We work on a 1-10 ratio and have adjusted basals down to help. Bolus BEFORE starting eating can stop the forgetting afterwards.. the hard stuff before food. Espcially if your son was with you and you worked out the carbs and then let him go and eat. - yes easily a genuine forgetfulness. We have moderately good control, she is using Dexcom because she started Boarding School this year, but I don't expect too much at all.
     
  4. Sarah Maddie's Mom

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    Reading your most recent post, I have to keep reminding myself that your kid is only 11.

    There's not one thing here that my kid hasn't done nor, I'll wager, every kid over 10 and D for years. You really can't expect an 11 year old to be on top of this stuff without a parent looking over their shoulder.

    I also wouldn't use up all my chits over one screw-up, i.e. loss of the phone for good. That's a threat that will come back to bite you.
     
  5. DavidN

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    We have a similar situation at our home. In the heat of the moment, it's not easy. Not even close. But just a few comments (things I tell myself when I'm not in the moment and emotional) ...

    Your kid is 12 years old. You cannot reason with a 12 year old. His brain is not fully formed. It's like trying to reason with North Korea. It won't work.

    Getting angry and worked up accomplishes nothing. Ever. It gives him leverage and undermines your message.

    Are you really going to sell his phone? Really? Doesn't he need the phone to message you?Don't threaten it if you're not going to follow through. Is there a chance your threats have become "white noise" to him?

    Your orders now are to "not do something stupid". This is way too vague for a 12 year old. I'm not even sure what that means.

    My dime store advice?

    Be Calm. Be Clear (clearly articulate what's expected and the consequences for not following your rules). Be Consistent. And do not Negotiate.

    I know it's easy for me to sit in the peanut gallery and throw things at you. I violate these rules every day. But I work at it and I'm getting better, and so is my relationship with my son (and my wife). Keep plugging away. Change won't happen over night. I know it ain't easy. Talking about it and having a conversation with other parents is a big help. Keep at it Dad. Don't underestimate the importance of caring, and you obviously have loads of that.
     
  6. DadTheImpaler

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    A lot of good points, absolutely. I was pretty fresh from learning all the details and still pretty upset/disappointed. Calmer now. Even earlier, I was more incredulous than outright angry, believe it or not.
    To be fair, my orders were much clearer than to "not do something stupid". I had pointed out that to not perform manual boluses should be an easy commitment, as he knows that it's not a smart move, and not a feature we ever use.
    But yes, maybe the phone is the wrong threat - it was a stupid impulse threat, but I was just desperate to find something that would give him a stake in the game; something to lose that he cares about.

    I don't think the ADHD is making him mean. I don't know that he's ever intentionally mean, really - he likely can't appreciate how much a lie about his health can hurt a parent. He can certainly see mean at times while fighting with his sister, but some of that is lack of impulse control. I'd feel better if I saw more remorse and emotion when he's caught doing something wrong. And yes, he has had a significant number of visits with an expert, who suggested that some kids who are ashamed respond with apparent anger rather than a hangdog expression and/or tears. The cuddly behaviour afterward (which sometimes feels like it's too son) is apparently their way of apologizing. If I hadn't been told some of these things, I might be more concerned about something like bipolar.

    When he's on his game, he's pretty awesome, I gotta admit. A great physical specimen with brains and sometimes a prodigiously quick wit. I told a counsellor once that I think I may spoil him sometimes because I wasn't one of the "cool kids" in school and I'm subconsciously trying to impress him.

    Man, these human brains are complicated contraptions...

    Oh, and DavidN: I'm not sure I'll ever again be able to look at my son without seeing Kim Jong Un - thanks for that! lol
     
  7. Annapolis Mom

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    Thanks for sharing your story and being so open to advice. I have recently read the book "Parenting without Power Struggles" and it worked wonders for my relationship with my daughter. One of the things the author suggests is to ask yourself why your child is doing what he's doing (sounds obvious, I know). But seriously, do it. The manual boluses sound like a terrible idea to you, but in what way is it a good idea for your son?

    I have struggled a bit with the food thing with my daughter (she loved sneaking fruit snacks--our quick-acting sugar of choice) and she is finally over this behavior. One thing I tried to keep in mind was that we are in it for the long haul, and that the teenage years will be even harder. My goal was to ignore the immediate high blood sugar consequences of what she was doing in order to help her make better choices. And better choices can't be accompanied by a fear of getting in trouble. There were no consequences involved when I found out about the fruit snacks. Instead I hugged her, told her I loved her, sometimes strategized with her a way to stop doing it, and reminded her over and over that the important thing was to bolus. Now, she rarely sneaks these snacks, and when she does, she boluses.

    I always try to remember that she is only going to get older and more independent. One day soon I'll have no control over what she eats. So I'd rather make sure that she is in the bolus habit than try to control what she eats during the few years I have left of doing so. And on that note, I also try to eliminate all diabetes-related struggles between us. I have read a lot about how even the most compliant children throw diabetes management to the wind when they're teenagers. One thing I try to do is eliminate the "I hate diabetes" dynamic but only offering kindness as I help her manage her disease. I'm not always successful, but I think it's the right path.
     
  8. quiltinmom

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    We have always used bolus wizard (same thing as ezcarb?). The manual bolus feature is one that we never use. But I have met people who do use it. Instead of counting every carb, they can look at a meal and know how many units it will take to cover it. It's like they just get a sense of how many units they need, so they take insulin by units, not by carb count. Same with corrections; they know how many units they need, and bypass bolus wizard.

    Now, it would drive me absolutely insane if Ds wanted to bolus that way. But for some, Doing things that way is just easier. These people have good a1c's so it seems to work. And if it works, I don't see why they should do things differently.

    What I'm suggesting is that if your son is taking that approach--understanding hoe many units he needs "by feel" (or quick mental calculations) it may be what works for him. From his point of view, he may be thinking that taking 3 units via ezcarb or 3 units by manual bolus is the same, why does it matter which way it's done. If he's just taking random amounts, that's very bad, obviously. But maybe, for example, find out how he came to the 3.something number for the correction dose. If he is good enough at keeping track of IOB and carbs, etc. it may be a viable option. So I do realize we are talking about a 12 year old with ADHD. I'm not sure if it's reasonable to expect him to be as mature as that when caring for diabetes. (Only you know your son well enough to know that.). I only say this to point out that there is more than one way to properly treat diabetes, and sometimes we have to swallow our parent pride and let our kids do things differently than we would, as long as the end result is the same. So I'm not saying you should back down on this point, only to consider it.


    Others in ds's health care team have asked him whose diabetes it is. It's his. Not parent's, not the dr's, etc. it is ultimately his responsibility. If he can own His diabetes, it will go a long way toward better management. That requires giving him some leeway; small amounts at first, and more as he grows and matures and proves himself. Maybe you could try asking him what he thinks he should do in a situation, then tell him what you would do (and if you disagree, let him have his way sometimes, for the more minor things; Sometimes it turns out he was right and I was wrong, but if he was wrong, the lesson has a lot more impact) instead of telling him what to do every time.


    Good luck. We are here for you.
     
    Last edited: Feb 4, 2015
  9. nanhsot

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    My son absolutely, resolutely, flat out refuses to input carbs into his pump. His CDE has explained, his MD has threatened, his mom (me!) has begged. He dislikes inputting carbs into his pump. He's an adult now so clearly I no longer have control but even when I did, I chose to trust him but verify that my trust was earned. He NEVER forgets to give himself insulin. Never ever. And he's really really good at being able to look at a food and know how much insulin he needs. He's not perfect, clearly, but every time I pop in to double check his internal math he's scarily close to perfect. He had the Ping with EZ carb, never once used it. He's on tslim now and has literally worn out the top quick bolus button 3 times, that's pretty much all he uses on it. He tests regularly and he always boluses. That's enough for me. You say your son has lived with this most of his life, perhaps he really does have a good handle without the use of EZcarb. I'd try a deal with him, as long as he tests and boluses, he doesn't have to input carbs. See if that levels out. Yeah, it makes going to the endo harder because you don't have records, but if it brings his A1c down, it's a win.

    I realize that his age makes this not a parallel at all to your situation, but I did want to give another perspective. For me and my kid, not bolusing is a major thing...but not entering carbs? Eh. Not a hill I'm ready to battle on. Focus on the positive, he input insulin, correct?

    I also want to state that my son is MEAN. Horrible ugly mean...when he's high. Doesn't mean I don't expect respectful behavior, but it does help me avoid getting pulled into the emotion. He's ADD, so we have that challenge too.

    Parenting isn't for wussies. As others have stated, be careful of issuing big threats you'll regret later. Offer to take over if it's too much. I'd also lighten up on food restrictions, my kids haven't asked for snacks since they were pretty young, they police their own food intake for the most part, just make sure what's available is healthy and good, boys entering puberty actually are starving 90% of the time! I've seen my kid eat a sandwich 20 minutes after finishing dinner. That part of this is only going to get worse in the upcoming years so I'd personally advise opening up the pantry to him as long as he agrees to ALWAYS bolus.
     
    Last edited: Feb 4, 2015
  10. BarbDwyer

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    As a share two of my kids have LD's that make it extremely difficult to talk through math or do math on paper. However - they are very good at basic mental math. They can pop out an answer and be correct but the act of either writing it or verbalizing it out loud is painful to watch. Reading the above answers made me think of that. It amazes me because I'm the opposite.

    My 13yo with T1D is not one of the above. He despises keeping a log though and basically refuses to do it. He always boluses but he does not always test his bg first. He hates to test for some reason. Kind of like I hate to floss my teeth only he has to do it many times a day :(

    I also suspect he does a lot of guess work for school lunch but he must do fine because his numbers are OK. That age between child and more capable teen must be so difficult to manage.
     
  11. mamattorney

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    On the whole - bolusing via carb count vs. bolusing via unit - maybe you could calculate an approximate dose for his favorite foods and write them on the package for awhile to help him with this method of bolusing. Then make sure he knows his correction factor, so he should add a unit for every 50 points over his ideal blood sugar etc.

    It kind of reminds me of weight watchers points - one dieter looks at something and thinks 200 calories, a weight watcher might look at it and think 4 points.

    So he looks at chips and thinks "2 units" instead of "30 carbs".

    ETA: I agree it's not ideal, but it's also not the worst thing in the world. But it's a lousy method if you are just randomly guessing - there has to me some method to the madness.
     
  12. DadTheImpaler

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    I might take a look at that "Power Struggles" book, and another that was mentioned - certainly couldn't hurt.
    I have asked him why he's doing what he's doing, even shortly after he's done it (a manual, no-test bolus or a missed bolus). I've yet to get more than a shrug or an "I don't know". That's where I often come out with, "How can you POSSIBLY not know why you decided to give yourself 3 and a half units without testing, half an hour ago!?" It's happened too many times for me NOT to sound incredulous about it anymore, as unhelpful as the tone can be.

    I guess part of the panic is the fact that, if we don't get his A1C back down under 8, the hospital won't support him even being on the pump anymore. My wife has phrased it as, "You'll lose your pump!" although I don't think that they would actually have the right to do that...

    Even if I confirmed that he had a reason for doing a manual bolus, bolusing via unit would be extremely tricky, since his I:C ratio at night is nearly half what it is in the morning. An apple might be 1 unit at night, nearly 2 in the morning.
     
  13. hawkeyegirl

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    Oh geez. Well, you need to make sure you stand up for him with the hospital re: losing his pump. The pump isn't a "privilege", and the hospital has no right to take it away. I think it's a dumb threat on their part, anyway. It's much easier for a teen to bolus with a pump than with a syringe. He's probably even less likely to bolus if he has to hunt something down that's not attached to his body.

    Here's the thing: He's telling you that you're expecting too much from him. Take it all back over. The bolusing, the testing, the counting of carbs. Take it all back, and don't act like it's a punishment. He's just not ready. It's okay. My son is almost 11 and is not ready for that level of responsibility either. It will come.
     
  14. Beach bum

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    Exactly this ^^
    Taking the pump away would IMHO, punish him for having diabetes and being 11 and not being able to handle the pressure of all the responsibilities.
    If a hospital tried to take my daughters pump away for reasons other than it has turned into a droid and is trying to take over the earth, then it would be over my dead body.
    Think about it, he's 11, pre-puberty, on top of it he not only has diabetes but ADD. Think of how out of control he probably feels at times. Is it an excuse for his behavior? Absolutely not. But, it explains a lot too. I agree, take over all responsibilities. Write carb counts on everything. Set down rules. If you want to eat it, fine, bolus. BUT, if you don't those items are gone and you can have all the free stuff you want. As for the random blousing, sit him down and calmly explain what will happen if he continues to not test and just pulls random blousing amounts out of the air. He will endanger himself.

    I think what I would probably do in this situation is go back to treating the child as if they were 4 or 5 and completely not in control of diabetes. Doing all diabetes related chores, going to school to bolus, doing set changes. Inconvenient? Yes. But it's better than him getting too much insulin and having a seizure.
     
  15. BarbDwyer

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    My son is 13 and if I'm around I do everything but actually give the shot - he does that himself. I count the carbs, figure up the units, change the needles, make sure the supply box is full, haul the meter over to him, half the time I bring him the damn pen, #suckerborneveryday When we go out together I carry all the supplies, pack everything up, etc. I've made sure he knows how to do it all so he can do it when I'm not around but he's lazy! and that is OK. I'll fight with him about putting his clothes away. Such a hard age for your son and the combo of ADD/T1D.

    If you are looking for books I thought this one was great for understanding all the negative behavior. Survival Strategies for Parenting Your ADD Child: Dealing with Obsessions, Compulsions, Depression, Explosive Behavior, and Rage Paperback – September 24, 1996

    Luke is MDI. I don't even understand the thought process of taking a pump away for a higher A1C. I thought the pump was suppose to reduce the A1C so that would be the last thing they'd do.
     
  16. aprilodell

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    I have read that one risk of the pump is DKA..not sure if that is from not bolusing or from a possible site failure going un-noticed. I think because if at any given time there is no long acting on board.
     
  17. Sarah Maddie's Mom

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    This is one of those dated bits of information that just won't die. You'd have to be really checked out to fail to notice a blown/over-used site for so long that a kid would be in DKA by the time you noticed. High and spilling ketones? Maybe, but DKA? One would have to be profoundly incompetent to wind up there.
     
  18. hawkeyegirl

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    There have been a number of studies done that show that people who pump are LESS likely to end up in DKA than those on MDI. I imagine a number of factors contribute to that, but it's no reason to take a pump away from a kid who is just overwhelmed with too much responsibility.
     
  19. DadTheImpaler

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    The whole "losing the pump" thing is probably not a realistic concern. For the short term, at least, we'll just need to be hyper-involved with his eating/bolusing.
     
  20. Sarah Maddie's Mom

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    Which, in my experience, is pretty much the norm for most 11 year olds with Type 1.
     

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