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I need some links to articles, etc - a bit morbid topic

Discussion in 'Parents of Children with Type 1' started by Nancy in VA, Apr 28, 2016.

  1. Nancy in VA

    Nancy in VA Approved members

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    Just had lunch with a friend whose daughter is Type 1. Diagnosed at 12 and she's away at her first year of college.

    Daughter has started drinking
    Daughter has stopped being real responsible for her diabetes. She rarely checks even 4 times and day and the readings when she does are very high.

    She landed in the ER on Tuesday night - we're still not sure if it was alcohol poisoning or early DKA. She didn't even have her meter with her.

    Talked through a lot of scenarios and concerns with mom today. One thing is she really thinks her daughter thinks that "she's not going to die" from diabetes, or diabetes and drinking. She gets the typical "eye roll" "Oh mom" when she tries to discuss those types of things.

    Do you have any links to articles about real life situations of people that have had things happen to them because of their diabetes - maybe its a low that caused them to pass out driving, or someone that drank and died. Really, one of the many things she wants to show her daughter is the fear is real and here's why.

    Trust me - they are not in a mode of "trying to scare her straight" - there are lots of facets of their situation that they are trying to deal with, the reality that disease can be dangerous is just one of the things she needs to address with her daughter.

    Any links?
     
  2. Snowflake

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    First of all, I started to go back and try to find articles that I've read over the years about worst case scenarios, but I couldn't bring myself to enter the necessary search terms into Google. Hoping others can help you out for the question you posted. :(

    To offer a slightly different tack, it might be worth looking into whether there's a college support network available at her school. I've read about this organization, https://collegediabetesnetwork.org/, and it seems like peer networking is a good way for some young people to educate themselves -- the message might penetrate better if it came from other young people living with T1 than from Mom and Dad...
     
  3. mmgirls

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    I am no help, I suck at finding the info I "want to share".

    But I am glad that we have had the conversations already at age 7 & 11 that they will not be able to drink like their friends might because it would be more dangerous. we have also said that Glucagon is a last resort, I would rather anyone call 911.
     
  4. Nancy in VA

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    Our local JDRF chapter has an adults with T1 group - they are mostly young adults in the mid-20s. I had actually suggested that we reach out to them to find her a "buddy" that has been through where she is now. Mom is saying she's in a truly "I'm invincible, I don't need anyone else, its not really that bad" mode, which is why mom is struggling.

    Her daughter was 12 when she was diagnosed and she took on the management of her diabetes from the beginning, so mom hasn't done more than be a support network from the beginning. I talk to her about the emotional burden that her daughter is carrying - she's in a social environment where the kids are stretching their wings, rebelling a bit from their parents, and she just wants to fit in. She likely doesn't want to stop and check because her friends don't have to check, etc. I talked to her about this summer she may need to take some of the management from her daughter and relieve some of the burden that she's carrying. I think mom is struggling to understand the emotional impact to her daughter, maybe because she never really had to do it herself. She was saying "it takes 30 seconds to poke her finger", so I was trying to explain the emotional burden of having to stop and pull out her meter while her friends are just grabbing a piece of pizza, or a beer.

    I also talked to her about maybe finding a counselor - one that specializes in kids with diabetes - that her daughter can talk to about things she won't want to share with mom.

    She's wrestling with so many emotions right now - fear and anger at the top of the list.
     
  5. rgcainmd

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    Another approach might be to learn how to dose before consuming alcohol. I know my line of reasoning will likely rustle a lot of feathers 'round here, but here goes:

    The young lady in question is likely not only doing the "testing the limits of her newly found freedom" thing, but also rebelling against the limits her D imposes on this freedom. So accepting and respecting the fact that she will be overindulging in alcohol (you don't have to like it!) may go a very long ways towards getting her to be more responsible (i.e. getting her to drink more responsibly). Will DuBois has posted quite a little bit about how to drink safely if one has T1D on his site, which I am too lazy and short of time ATM to link. I'm thinking that if winding up in the ER didn't "scare her straight", no accounts of other, more tragic outcomes will... Better to accept the fact that she will drink herself silly more than a few times during college through her 20's or so and learn how to do this as safely as possible, than to risk her digging in her heels and cutting off her nose to spite her face, IMO...
     
  6. Nancy in VA

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    The problem has been when mom and endo wanted to talk about how to manage drinking with diabetes before she went to college, her response was "I'm not going to drink" and she didn't want to hear it. I did talk to mom about how her daughter may just really need a break and mom may want to take it over for a while this summer.

    Our Jdrf chapter is having a workshop today with th counseling and endo department of the local
    Children's hospital to talk about transitioning to college. The mom is going.
     
  7. Mimikins

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    Could they establish some sort of middle ground with regards to drinking and diabetes? For instance, would the mother be willing to call every few hours during the night to remind DD to check her BG (or use something like dexcom share, or if she lives at home have DM take over overnight diabetes care after drinking) while DD would make sure to drink responsibility for her diabetes (not binge drinking, consuming alcohol slowly and with food, having water every other drink to prevent dehydration, being more conservative with bolus insulin and programming a lower temp basal if she's pumping, letting others around her know about her diabetes, having a snack before bed, wearing med alert).

    I might be a bit more liberal about alcohol and diabetes. I understand that alcohol and insulin is a very dangerous combination, but I'm not going to lie and say that I'm never going to drink. My next endo appointment is a few days before my 21st birthday, and I really want a lot of the focus for that appointment to be on making sure that my strategies for alcohol and diabetes are sound. The big thing is to make sure that she is being responsible.

    I found these pages to be really helpful:
    https://collegediabetesnetwork.org/content/touchy-topics
    http://www.drinkingwithdiabetes.com/students/

    In terms of scary studies, there is one that shows the GCM data of a man who experienced dead in bed syndrome (which is a huge concern with alcohol). That study scared me into taking the time each night to make my nights as smooth as possible.
     
  8. wilf

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    Two young men in my circle of high school acquaintances had Type 1 diabetes. They drank lots, and did very little to manage the diabetes. They were both dead by their early-mid 20s - one from complications and one dead in bed. It was a senseless and tragic loss in both cases. The daughter of your friend is unfortunately heading in this direction.

    The parents needs to insist on:
    - minimum of 4 BG measures daily, with insulin given at meal times;
    - precautions when drinking to make sure she wakes up next day.

    Unless the daughter is independently wealthy, the parents will have lots of levers. They need to make use of them.
     
  9. jenm999

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    I agree with wilf. I don't think "scared straight" will work for her - it doesn't seem like a case of ignorance or even teen sense of invincibility. It sounds like burnout and self-sabotage. I agree with others who suggested mentoring. But I also think in the short term she needs tough love.
     
  10. Nancy in VA

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    Thanks for all the info. Daughter comes home from college so they will be starting some difficult conversations. She has a planned trip with friends that they will likely not allow her to go on (the girl paid herself so she'll be out the money), she will be paying the out of pocket for the hospital, and they are considering that maybe she can't go back to her college 8 hours away next fall if she can't demonstrate a basic level of responsibility for managing her diabetes without parental oversight. The mom didn't quite understand that it could be burnout but I think she is really understanding that better now. Its a tough situation because the dad's mother (girls grandmother) is alcoholic and they've had to be "tough love" with her and I think he's fearing his daughter is heading the same direction as his mother and doesn't know how to handle it any other way than how they had to handle his mother. But, its so much more complex than that with the diabetes factored in.

    Mom has never said daughter can't drink. Daughter was the one that declared "I'm not going to drink so I don't need to hear about it." I don't know if the daughter was just delusional about the pressures to drink in college or lying outright, but it doesn't matter. She needs to know about the risks and how to manage it.
     
  11. Christopher

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    I agree with the others above. It appears you could bury this kid in scary articles about people dying from alcohol and it is not going to phase her. You are being a great friend and doing and saying all the right things, but the bottom line is that unless the kid wants to drink responsibly while in college, she probably isn't going to. Tough story to hear, especially with Danielle close to heading off to college.
     
  12. rgcainmd

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    I think "not allowing" her to take a trip with friends that she already paid for herself is not necessarily a good idea and may very well backfire on the parents. This young woman's parents don't have to continue paying for college or for a roof over her head or her food, but the bottom line is that she can survive without them continuing to financially support her. It is far from easy, but pre-twenties young adults do it all the time. She is technically an adult and doesn't have to follow her parents rules if she doesn't partake of their money. If she is unable to see the danger in the choices she has been making, I kind of doubt that the threat of being financially cut off will make a big impression. Or she might agree to follow their rules in order to receive their financial support and go back to partying and hiding it from them. Her parents should consider the very real risk of her response being "I don't have to go to college. At least not right now. I can go later. Or not at all. Not everyone goes to college. I can get a job for now and live on my own and do what I want, when I want to do it! I'm an adult and my parents can't ground me any more." She may not yet have enough money for first and last month's rent, security deposit, etc. but most people have any number of friends willing to let them sleep on their sofas until they find a low-paying job that will [barely] cover sharing a crappy apartment with a roommate. I have no idea what the best way to move forward is at this point, but I think this version of "tough love" may result in a situation that ultimately leaves everyone unhappy.
     
  13. glko

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    My husband was dxd at age 15, I met him in our 20s in college. He drank plenty in college and I was too ignorant to be concerned at that time. He did employ some strategies for "safer" drinking. Your friend is not going to stop her daughter from experimenting with alcohol if she is determined to do so. She will not believe that bad things could happen to her, and if she does it just may make her more depressed and care less about her diabetes. My husband's sister died from complications of T1D when she was 26yo and he was 24yo. I think that after her death he was MORE reckless and took more chances. Looking back now he recalls that 1) he was depressed and drank to forget and 2) he figured that he was going to die young too so might as well have fun now. Why work on having good diabetes control if I am going to die young anyway? Each person's response is different. I would suggest focusing on safety vs control at this time. Better to have a couple of years with not great A1cs than die young of acute complications. As she matures and her brain fully develops she will realize, as we all do, that we are all mortal and it is worth it to take care of the bodies that we are given.
     
  14. Nancy in VA

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    I haven't talked to my friend in a few days to see how they think they are going to approach it. Their daughter is a really good student and is driven, so college is what she wants. I don't think she'd say "I'm not taking your money - I'll go out on my own", but it could happen.

    Her parents aren't against her socially drinking - they just want her to be smart. It was their daughter's insistence that she wouldn't drink, so she didn't need to be educated about it that frustrated them. They knew better - their daughter just didn't yet.

    I think the biggest thing they are considering is that they may say if she doesn't demonstrate a higher level of responsibility to diabetes management, then their college money is only good to a local college. They are really fearful for her safety, both from overall diabetes management and from excessive drinking and not good diabetes management. And she is a typically invincible teenager, who doesn't think anything bad can ever happen to her. Mom doubts the trip to the ER even scared her, because even the next day, she was off with her sorority sisters at a lunch, even when she was supposed to be texting info to her mom. I think there is definitely some rebelling going on and she's been such a good kid to this point - parents first - that they are struggling with the right way to deal with it.
     
  15. KatieSue

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    My kiddo is 20 and in college. She's really had a bad case of burnout the last couple of years. She's working on climbing out of it but it comes and goes. Luckily, so far, she doesn't like the taste or smell of alcohol so we haven't had that issue. But not testing etc happens all the time. Some of the things she said about is she doesn't want to test because she knows it will be a bad number. She doesn't like wearing a CGM because it constantly reminds her that she's not taking care of things. At this age they don't see the bigger picture, they want to fit in and they're just tired of it all.

    Mine started a College Diabetes Network chapter at her school which has helped some. Just to have peers to talk to. She's also started helping at the local JDRF getting a teen group going. It really is still a daily struggle for her to keep on top of it. For mine it had to be her idea. The college diabetes network was all on her own, as has been the JDRF teen group. She doesn't want the "diabetes police" looking over her shoulder, even if she needs it.

    I don't think there's any one thing or easy solution. It seems to be one of those things they have to figure out on their own, usually the very very hard way. Some peer support might help as well as some basic education about this is what happens to diabetic on alcohol. Hoping they can work her through it.

    This site has some good information both for kids and parents http://www.drinkingwithdiabetes.com/
     
  16. caspi

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  17. Christopher

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  18. quiltinmom

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    I've been watching this thread develop, and so far this is my favorite response. I don't think she will respond well to "look at all these people who died" or parents threatening to take things away, although I would consider this for an out of control child, so as to stop enabling bad behavior.

    What happens to a lot of young people is they fall into the "everyone does it" trap. What she needs is a mentor, (another type 1 diabetic would be great) a friend who is responsible to show her that not everyone does it. Not every college student gets wasted every weekend. Not everyone abandons common sense. Someone who can show her how to have fun without endangering herself.

    I don't know what this young woman's motivations are, but if her parents can get to the bottom of the whys, it will get them a long way toward helping their daughter. If they can get her to open up, that will reveal the solution.

    I wonder if part of the problem is she doesn't want her parents to be disappointed in her. Sometimes young adults rebel because they feel their parents are disappointed in them, so they may as well give them a reason to be. A little love and understanding can go a long way. I have no idea if this is happening here, but I wouldn't be surprised. Then there's the diabetes layer, which brings up lots of other things too. What I am trying to say is, This may or may not be wholly about diabetes.

    I wish the best outcome for this young lady and her family.
     
  19. Mish

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    I haven't yet done the college with diabetes thing, but I have done the college thing. All the kids say they're not going to drink. And what we did was said to our daughter, "look,I know you say you're not going to drink, but you will and these are things we need you to be aware about." we just didn't accept the "I'm not going to do it." She got the talk regardless.

    I would say maybe reach out to the people at the College Diabetes Network. I've met the founders years back and they really have strung together quite an organization. They might have some great resources for you.

    I think the big thing to realize is that she has to eat plenty of food and try not to over bolus. Those seem to be the two major things. And have a buddy that knows what's going on.
     
  20. Junosmom

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