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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. DadTheImpaler

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    I'm not terribly active here - maybe I should be, as I'm sure many of you can relate to some of these unique issues.

    I'm really REALLY struggling here. Will try to keep this short, but it's not going to be easy. He's been diabetic essentially his whole life (he's nearly 12), pumping for 3 years now. We've been dealing with years of behaviour issues, with his ADHD not helping matters, but meds for that have at least helped his school experience (not looking to debate the merits of ADHD meds, but laying the foundation here).

    At his most recent checkup, his A1C went from 7.7 to 8.8 in 3 months. Stealing and hiding food has been an issue for years, but particularly in the last year or so. His behaviour when he's high is brutal: rude, disrespectful, foul language, hateful... He's not a perfect angel when in the normal range, but he can be a pretty great, lovable kid. Over the years we've spoken with teachers, principals, psychologists, urologists, dieticians, counsellors, etc.

    You always hear that consistency in parenting is important, but that's tough when you constantly have to move on from things that don't work. Dealing with him has been a constant preoccupation, and the stress of the irresponsible behaviour and disrespect is very hard on our marriage and life in general, and not fair to our daughter, whose behaviour is comparatively angelic.

    Today was exceptionally bad, but not unprecedented: while shopping for a birthday party, we had yet another talk about, "Don't steal food, but if you do: bolus. But please don't do it. But bolus if you do..." He agreed that it would be better to bolus (therefore leaving evidence), and that I would agree not to come down too hard on him when he's caught. Post-party, we had some behaviour issues that prompted a blood test. 24.1, which helped explain it. A few minutes later, when trying to give him an EzBG, I noticed a significant amount of insulin on board. I dug deeper. He'd already given himself an EzBG of 4.5 units, ignoring the IOB that indicated that it should have been reduced to zero. The history showed that, just prior to leaving the party, he'd given himself two boluses of nearly 3.5 units each, 7 minutes apart, with no prior blood test. This was apparently for a couple slices of pizza, and then cupcakes and ice cream, eaten a half hour earlier. They were not EzCarb boluses, so he was just guessing at the bolus (why not guess at the carbs? He's actually pretty good at estimating). So he had, in my opinion, too much insulin and then too much of a correction (assuming he didn't eat more than he's admitting, which is very possible).

    So for the last hour or so he's been raging in his room, with a few defiant escapes, vile tirades, and escorts back. Every sentence out of his mouth is dripping with venom. Eventually things will settle down, he'll get all lovey-dovey again, and try to make small talk like nothing happened. But it DID happen. It happens a LOT. It happens so often that in moments of anger/despair, I've told my wife (privately) that I just want him out of here. It's hard to say/hear, but at those moments that's how I feel: I want his two weeks away at Diabetic Camp to happen much more often. After years of this, it just feels that I'm wasting my breath on him and it's hopeless. I have these strong negative feelings about him, which I instantly multiply back at myself and my wife for clearly failing so badly.

    Things I know I can do: no unsupervised outings, food under (figurative) lock and key. It's not all blood sugar-related, but I know it's a factor, and that's where I'd like to draw on the experience of other parents.

    Thanks, and sorry for the length. There's just SO much more... Had to get it out.
     
  2. sszyszkiewicz

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    What do you mean by "steal food"? Is that something to eat without your knowledge?
     
  3. KHS22

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    Not much to offer in terms of personal experience.

    Just wanted to say - be gentle on yourself. Dealing with ONE of ADHD, or T1D, Behavioural problems etc is exhausting and stressful. You have them all rolled into one plus a tween which is a difficult age without any of those!

    Do you have good support from the medical field in terms of his ADHD/behavioural issues?
     
  4. mamattorney

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    Oh My! Do I feel for you! I also can't speak with too much experience except general tween attitude issues which we have over here in spades! If disgusted sighs, disdainful glances and eye rolling were Olympic sports, I'd have a triple gold medalist living with me.

    I will say one thing on the food front. Since somewhere around the end of summer/start of the school year, my daughter's appetite has increased in a HUGE way. I swear she could easily out eat myself and my husband. No more kids menus meals at restaurants for her. We try to keep healthy food in the house (with some junk) but the sheer volume that she consumes, healthy or not, is a little startling when compared to just a year ago. I am a manager for a team that she's on and the team (4 kids) meets at my house every Friday after school to work on their project and all four of them (all 6th graders) eat like they haven't seen food in a week. I usually make bags of microwave popcorn for them and the 4 kids inhale three bags of popcorn in 10-15 minutes flat and if I made them more, there's no doubt they would eat more. It's unreal.

    You speak about stealing food and I don't really know what that means. I don't know if that just means snacking without asking (and you'd be fine if he asked) or if it means something more (maybe you limit carbs or monitor other parts of nutritional make up). But just know that your kid might be really and truly, flat out HUNGRY. And he might need to eat more than you think, he might need to eat seemingly all the time, he might need to eat more than YOU. So while it's unclear to me whether you fight over amount or types of food (or if you are just fighting about missed boluses), I would try really hard to not make the actual amount of food eaten to be a battle. If the kid needs to eat, let him eat. If you are worried about him eating too much junk food, then just keep it out of the house or allow enough so that you are both slightly disappointed (he'd like more, you'd like less -- if everyone is slightly unhappy, then it's probably a reasonable compromise)

    Just a thought. . . if you can eliminate one battle, maybe the others won't seem as bad.
     
  5. DadTheImpaler

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    I hadn't considered that we may have a future Olympian in eye-rolling - maybe we can leverage that! lol

    We do have (or have had) good medical support for the behavioural issues, but we've been through many different resources over the years, hence the inconsistency. The best thing to come out of it has been medication for ADHD, which allows him to be much more effective at school. The teachers really notice if he has missed a dose.

    By "stealing food" I do mean sneaking snacks/drinks/sweets without asking. I'd usually (but not always) be fine if he asked, and I'm much more concerned about the missed boluses than the amount or types of food. We don't keep an atypical amount of sweets around, but for example, shortly after Christmas he made his way to a high shelf in our kitchen and absconded with 5 3-packs of Lindt chocolate balls that were leftover from Christmas dinner. I ended up eventually finding the wrappers under his bed. Along with Nutri-Grain bar wrappers. In the past it's been Splenda packets here and there, Halloween candy wrappers under the bed, or fruit-juice freezie wrappers from the basement freezer squirreled away under the basement couch. He gets enough to eat, I think it's more boredom-eating than anything.

    Typically, a bolus doesn't accompany these events. The desire to NOT produce evidence is sometimes a reason, but not always. That wasn't the case yesterday, and I can't fathom his reasoning. I've explained to him that not bolusing is analogous to holding a glass of poison in one hand, and the antidote in another. Why would you drink the poison, then discard the antidote, especially knowing how rotten the poison will make you feel? Test-measure-bolus-eat: this is how eating has worked for years, how can you deviate from that because you "forgot" so often?

    He's clearly more subdued this morning: "Do you remember much about last night?" "A lot of it." "What are your thoughts on the matter?" "I shouldn't have acted like that?"

    We'll likely try to talk about it a bit later in short bursts (ADHD isn't big on long conversations), I just know I'll catch myself in mid-sentence thinking, "I've had this exact conversation dozens of times - why do you think THIS time it'll get through?" I guess I just have to push past that. It's not like I didn't repeat mistakes growing up; it's just that my mistakes didn't seriously affect my health or cause me to go Dr. Jekyll- Mr. Hyde.

    Closer supervision will be key, moving carb-y snacks into areas where they can't be sneaked, and maybe I could start offering him these items more often, rather than waiting for him to sneak them.
     
  6. StacyMM

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    I have a 12 year son with ADHD and T1D. Very few people who aren't dealing with this combo will understand how hard it is. The concept of "if you eat, you bolus" seems so simple, but tween brain and ADHD makes that concept hard to follow. He knows he needs to bolus...but knowing it and doing it are two different things. And he eats without realizing it sometimes...he's busy doing something...his mind is somewhere else...I ask "did you bolus?" and he might reply "Huh?" while the food is in his hand. My son is also on a daily medication and it allows him to make it through the school day...but it kicks in after breakfast and wears off by dinner. There are phrases that I know I have said thousands of times. For us, we are incredibly overbearing about food. If he wanders into the kitchen, one of us wanders in, too. If he disappears, we find him. If he has a crazy high, we have the "before I change your basals, was this because of food?" conversation. We keep snacks in boxes, in containers, in a pantry so that the sounds made by accessing it will give us a chance to hear it. We check his bolus history regularly. We check them for overrides because he will just randomly enter numbers even though he knows the carbs.

    And, I'm not in the camp of "they can eat anything as long as they dose for it" parents. We never had free-range grazing in our house and we don't have it now. And the kids don't eat if they are over a certain number so we pre-bolus and wait. The whole family participates in this - not just the kid that needs to wait. We use pumps and CGMs so we have the info to make this possible. I'm much stricter about food than is typical on this board...but I have a tween T1 with ADHD and this is the consistency we need. He needs structured rules and consistent expectations. Sometimes it works, sometimes it doesn't. And he does understand that my job is to make him a healthy adult so I'm this way to minimize his long-term issues. He knows that we have his best interests in mind and that really helps negate the attitude. He understands WHY and he knows that we're here to help him develop healthy habits...which, with ADHD, can sometimes take years to sink in.

    Anyhow, I know what it's like. If you want to PM me to talk about anything, feel free :)
     
  7. sszyszkiewicz

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    I dont have any expereince with adhd at all. I am in no position to say whats worse here the adhd or the T1D.

    the only couple of points I would make, after reading what is a very small part of the hell you have been dealing with, is this.

    if your son is aware that he needs to hide wrappers it doesnt sound like he is mindlessly eating.
    People hide things if they think they are doing something wrong
    You indicated in your story that there was an attempt made to bolus for whatever he did eat at the party.
    You said he is pretty good at carb counting
    he is 12
    he gets bad bad when the numbers go up.

    Do you trust him to dose? I mean can he manipulate the pump ok? if he can do those things there should be no concept of "stealing" food. if he needs you to double check that is a different story. But you said "dont steal, but if you do bolus". The fact that you are calling it stealing sounds like to me that whatever food policy you have in the house may need to bend a little.

    maybe get a cgm so you can keep an eye on things without being in his space.

    reward good behaviour.

    if he can keep his numbers down, then the moods and everything else may be more manageable, but I dont know since I dont know anything about adhd.

    Good luck Dadtheimpaler.
     
  8. DadTheImpaler

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    Wow, it really does sound like you've gone through a lot of the same battles. I may very well take you up on your offer to PM, and thank you for the offer.

    Some very good ideas there, and I hadn't really considered that telling him that he's "stealing" food might be a poor choice of words that's driving him to hide the act and the evidence. A cgm would be great, but not something that we're prepared to do until my health benefits provider (GWL) clues in to how important it can be.

    Maybe we can find a healthy balance between a free-for-all, eat-what-you-want situation, and one where he's free to snack when he wants to (which I can indirectly control through limiting the supply).

    This has been really helpful - it really means a lot to me, thank you. Hopefully today can be one of our "good" days so that I won't be in a sour mood and can really enjoy watching my NE Patriots triumph! :)
     
  9. BarbDwyer

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    Oh man, I feel for ya. I have four boys. My son with T1D is 13yo. He often paces around the kitchen while he snacks or talks but he does not have ADHD. My other three boys do.

    We do not have the food stealing issue. I'd probably focus on bolusing and drop the rest for now. There is eating all night long in my house because the meds result in not eating enough during the day for my kids. Luke doesn't take those meds but he follows the household pattern. When candy or favorite snacks are available he actually stashed some in his room so his brothers don't eat it before he has a chance. There are no weight issues and my kids are just not wired to eat out of boredom. I'm not sure how to handle the food stealing :(

    Consistency and structure - all the stuff I'm sure you know already! Does your son get much physical activity? I finally, just this year, bit the bullet and purchased a membership to a gym/indoor swimming center in a fit of desperation. I insist they go twice a week, even when they don't want to, as long as the weather allows. It is a PITA and 35 miles away so takes a huge chunk of time. It has made a HUGE difference especially for Luke - who is difficult by nature ;), and my one son whose behavior/attitude is most affected by the ADHD - like you describe.

    My oldest had lots of meltdowns at home at that age and it was all about managing some down time after school. He also has CAPD and dyslexia and he was just fried after school. Could not handle one more thing and as the meds wore off he'd fall apart at the drop of a hat.

    Good luck.
     
  10. nebby3

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    I'm completely not an expert but I was struck by the fact that all the foods you mention him taking are sweet -- even Splenda packets! Seems like an unusual choice. That would tempt to look into if there are dietary issues or triggers going on.
     
  11. sszyszkiewicz

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    One last thing I was thinking about there Dad.

    Strictly from a t1D perspective, own the night. Make sure you have a good handle on those basals, and keep him in a good range when he sleeps. He cannot give you any crap while sleeping and if he starts the day good, well who knows. if you get good numbers for 8-10 hours a day that reduces the insanity Mr t1d introduces into his life during the rest of the day. So exact your revenge against Mr T1d at night.

    While you are doing it realize that is more than a subtle way to love your son.

    Finally since you seem to be outside of the USA, you might have access to the Freestyle Libre, kind of an in the middle technology between fingersticks and a CGM, and alot cheaper I understand. Getting snapshots of whats going on with your sons numbers will help you quite a bit given how long you have been at this game.
     
  12. jenm999

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    I don't have any advice but wanted to say you are very brave for posting about the dark side. You clearly love your kid and are going to figure out what works for him and you, and I wish you all the best.
     
  13. MomofJJ

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    I fully agree with what someone else said about rewarding good behavior. Sometimes focusing so much on the bad behavior ends up becoming almost a habit. It's easier to get into it over something they've done wrong (I think we've all been there. I know I have...) rather than take the time to make and initiate a plan that would have longer term and better consequences. My son doesn't have ADHD, though I do have an inattentive form of ADD myself and know what it's like to be absentmindedly doing things and not notice things I've done or that have gone on around me, when other people will think it's unreasonable for me not to have noticed. It's frustrating and upsetting. But as I think at least one other person has said, it doesn't seem like he is absentmindedly eating if he is hiding wrappers.

    For my son, we encourage him by giving him things to look forward to. (This works for my daughter too) Letting him choose the end of the month restaurant we'll go to, or picking a new game (A thing that goes over well with him, he REALLY loves earning new games!). Also, make sure your son has some choices. If he feels that he isn't being given any choices, IF he feels helpless, that might make him feel like taking control in other ways (such as stealing, hiding, etc). I don't know if that would be the case at all, but if it was, allowing him the freedom to have some choices might help IF that is a problem.

    If your son likes games like my son does, maybe set up a system where he can earn money or credits towards new games he wants. Sit down with him and look at games and let him write down ones he wants to save up for, and help him come up with ways he can earn it. Positive ways. Every family is different so you will need to come up with what you think is best for him. But it could be something like the more positive behaviors he displays, like treating people respectfully, helping out around the house, letting you know when he's hungry and eating or bolusing, etc, will earn him credits or money towards that game or those games, every day/week/month, however you want to do it. Or if there is something else he likes and wants that he could be motivated to work towards getting. Having something he can be excited about really can help.

    One more thing, yes, being high can make them grumpy. They don't feel well and anyone would feel grumpy when they don't feel good. But that isn't a get out of it free card to bad behavior. So I would say to treat that kind of behavior the way you would with a non-d child, just treat the high, and treat the behavior as well. And yes, sometimes addressing the bad behavior is needed, but I'm still of the mind that the less attention on it that is given, the better. Make as little of it as possible, and focus on the positive behaviors instead. That will not only potentially help minimize them, but will also help reduce the household stress levels of everyone involved. Sending my kids to their rooms though for punishment, usually doesn't cut it because their rooms have all the toys and things they like. Taking away their phones and game systems and TVs is what cuts it. So that is another thing to consider. I haven't quite hit the Tween or Teen years yet with mine, but I think if they start talking horribly disrespectfully, and positive reinforcements didn't work, my next move would definitely be taking away their favorite things and having them earn them back because I wouldn't be able to tolerate that. I treat them respectfully and I expect them to treat others, including me, respectfully. It's just that simple.

    I hope things improve for you and the stress eases up there.
     
  14. Melissata

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    Another parent that just wanted to say that I know a little about what you are going through. My daughter is not ADHD, but is cognitively impaired and 30 years old. We don't call it "stealing" food, but sneaking it, without bolusing. She has recently been living apart from us, for several months and is now back home again. During the time she was gone, and had 24/7 staff she had a couple of incidents that I know of sneaking food. Once was Halloween and I was called there because her blood sugar was so high. It was hours before I saw all of the candy wrappers in her trash can. I had changed out her site, etc. I was about ready to take her to the ER when I finally realized what I was dealing with. One thing that I have going for me, is that she HATES being over 200. So, the talk after the event is much more meaningful to her.

    My suggestion to you is to ease up on the food restrictions. I know how hard that is, but your sanity is worth it! I know he is young, but in this case I would really think about what could be solved by just relaxing the rules completely, and letting him eat anything that he wants to as long as he boluses. I have done that since my daughter has been back home and she seems happier and hasn't eaten anything that she hasn't bolused for as far as I know. I am teaching her how to weigh foods like a homemade cookie or cake that doesn't have a carb count on it. That way she doesn't feel different than everyone else. It really sounds to me like your son has a sweet tooth that just isn't being satisfied, and he feels deprived and different from his peers. I can only see this issue getting worse as he gets older and starts to eat like a growing teen.

    Good luck to you, and I hope things get better soon for your family.
     
  15. suej

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    I am sorry about your added challenges to T1D. I find diabetes on its own only just survivable, so ADHD too must be tough. My son is the same age as yours, and we have not had issues about sneaked or unbolused food - except occasionally when he forgets. My policy (within reason) is if my son can count it he can bolus for it and eat it, he does not need my permission at home or away. We do wait if he is high, and I incorporate treats into his day (so he does not feel deprived) - he goes to school with 10-15 carbs of chocolate every day (he was a chocoholic before diabetes). It really does help to have CGM because for your son in theory he should test before he eats mostly, which must be a disincentive to careful care as it is a bother, whereas we treat off the number on the GCM. As suggested above, the Freestyle Libre may actually be very liberating for your son.

    I hope things improve for you, good luck
     
  16. Beach bum

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    We don't have the double diagnosis, so I don't live it everyday. We have a very close friend who's got ADD. Her mom finds that when the med starts wearing off, she becomes absolutely ravenous. Too the point where when they first went onto a new med, she gained albs in the first week because she was raiding the cabinets at night, and barely remembering it in the am. It has since stopped since they worked with the doc to find a better balance. They have had to set some rules into place about it not being a free range kitchen (ie. just because it's there and you are a little hungry doesn't mean you can just help yourself). My friend has had to take away privileges in order to get her point across, and has stopped buying foods that are highly desirable. It's not perfect, but it helps. As the PP said, they know why they can't do it, it just takes many repeated offenses for it to sink in.
     
  17. DadTheImpaler

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    Right now we're going with, "You know what, eat whatever you want, just bolus for it. I promise I will give you NO GRIEF for whatever you eat, as long as you EzCarb!"
    He's a very fit, athletic kid playing competitive soccer. Between that and the scoldings I've gotten from him re. my own diet and lack of exercise, I suspect he won't become a glutton. If he's like me, sometimes having an abundance of something actually makes it less desirable!

    I'd never heard about the Freestyle Libre - found a great blog where they ran it against the Dexcom and compared results. The blogger also discovered evidence that the test results are being uploaded to Abbott despite a confidentiality statement to the contrary, so that's a story I'll be watching. Very impressive device! Should come to Canada this year, then will likely be a long battle getting insurance to cover it.

    Nighttime and morning levels are good, thankfully.

    Re. my "dark side": lol, yes we were told by a counsellor once that we made his job harder because my wife (child protection worker) and I were so self-aware and honest about how we're failing him. This probably rendered a lot of his usual first steps moot.

    Enthusiastically emphasizing the positive behaviour and being low-key about the negative behaviour has definitely been a common theme (although easy to slip away from doing), and I've been working on ways for him to earn money to be a little more independent.
     
  18. valerie k

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    if I don't have the Olympic gold eye roller, he is at least, the silver...

    My son is 15 almost 16. He has had diabetes half his life. He hates it, he is non-compliant, sneaks, hides, lies. We have taken back total control over him due to his horrid management as of late.


    in any case, one of the things we have started, is having "free foods" like when he was first diagnosed. Meat, cheese, eggs sugar free jello and popsicles and such are all at his disposal to have when he is "hungry" (which seems like all the time) I don't police those snacks, but others, we are on him like flys on honey, we make sure he first checks his blood, we bolus him on the pump. we check him every 3 hours (or so, we are not perfect either)
     
  19. DadTheImpaler

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    A mixed-results update for the first full day of "eat what you want, but bolus". Snow day today, but the school's right down the road and open. Still, I rescued him from a boring day by agreeing to bring him to my work, so he could spend the day playing video games in the company rec room. At lunchtime, he came up and we heated his lunch, confirmed what the carbs would be, and he took it away with him. The trail of evidence tells me this: He forgot to bolus for it (possibly an honest mistake). An hour later, he gave himself a 3.something bolus (not ezbg) without a prior blood test. A half hour after that, after I had texted him to tell me his blood sugar, he responded that he was 12.5. I asked him to ezbg. I got a, "Really, for twelve?" I said yes, that maybe the correction will be zero because of IOB. He confirmed that this was the case. As it turns out, he was actually 22.5, and at that point he didn't ezbg but just gave himself another 3.something bolus.

    So this evening I'm just flabbergasted. I've told him that I stuck my neck out for him by giving him this "food freedom", video games all day, played ping pong with him after work before heading home. In return for this, we've got 2 more manual boluses (which was the major blowup issue a mere 2 days ago) and a deliberate lie about his reading. I think there was something like, "I gave you everything you wanted, and you're screwing it up, making me look like an idiot, and then lying to me on top of it. So this is basically an eff you, dad." Argh!! At least this time he hasn't figured out a way to be mad at me for any of this.

    Okay, so... mistakes on my part. Even though he now has this freedom, clearly I still need to oversee that he actually tests and boluses. Check. I've also made him agree that the penalty for the next manual bolus is that his phone is gone. Permanently. Sold or given away. He was pretty upset about this, but I explained that it's not a tough commitment to keep. He just has to not deliberately do something stupid. It would be like giving someone a Ferrari, and the only caveat is that you don't park it on the train tracks.

    Sigh.... serenity now... serenity now... :)
     
  20. jenm999

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