- advertisement -

Discussing possible T1 D complications with your children

Discussion in 'Other Hot Topics' started by StillMamamia, Sep 1, 2010.

  1. StillMamamia

    StillMamamia Approved members

    Joined:
    Nov 21, 2007
    Messages:
    13,195
    Oh gee....maybe not a good idea to discuss this (a very emotional issue), but I'm really interested in what you think.

    Do you discuss the possible complications of living with T 1 D with your children or no? If so, why and at what age did you start? If not, why and do you plan to do it or are you waiting for a particular age or questions from your children?

    For me, I have no discussed it yet, and have not had my son ask any major questions about it.

    Thank you.
     
    Last edited: Sep 1, 2010
  2. MamaC

    MamaC Approved members

    Joined:
    Dec 9, 2006
    Messages:
    5,292
    We've discussed, and he's Googled it to pieces...because we are genetic Googlers. He's almost 18, though. He's also used the info to scare a non-compliant teen into a wake-up call.

    I don't think, if he were younger, there would have been a discussion yet of the "what ifs."
     
  3. Lee

    Lee Approved members

    Joined:
    Oct 5, 2006
    Messages:
    9,633
    No - I really don't. She gets so much of it from well meaning pains in my a$$, that I don't feel the need to tell her anything else. She knows that if she doesn't take care of herself, she feels crappy. She is to the point now that she can tell if she is over 200 by how she feels.

    She has never asked, but if she did, I would keep it simple but let her know of the major ones. But she is a smart girl - none of her other friends go to a doc every three months, or get their eyes dilated every year, or deal with bs during sports...she knows that it is serious and important for her to take care of herself.

    I think if I ever noticed that she was not taking care of herself, then I might pull out the reasons why she needs to. I will probably look at her meter on the sly until she moves out. Unfortunately, teens lie to their parents - shocker - I know - and this is one way that I can ensure her health and safety.

    Oh - I did talk to her about the dangers of seizures and overnight lows becuase she asked. I said that they are dangerous becuase the brain is not getting enough sugar and I left it at that. I didn't mention the risk of stroke, the risk of brain damage, or the risk of death - but she is smart - she probably picked up the risk of death by my panic!
     
  4. danismom79

    danismom79 Approved members

    Joined:
    Apr 21, 2008
    Messages:
    5,300
    I've discussed it very briefly, and only because one of those damn commercials came on the radio. What I basically told her was that complications can come after years and years of BG being well above range on a consistent basis. I wasn't concerned with accuracy at the time, I just wanted her to get to that "oh, ok" place in her mind and not worry.
     
  5. AlisonKS

    AlisonKS Approved members

    Joined:
    May 16, 2007
    Messages:
    2,391
    I'm not sure when we'll discuss it. Hopefully before someone tells him about their one legged diabetic grandpa who can't get it up!
     
  6. tiffanie1717

    tiffanie1717 Approved members

    Joined:
    May 16, 2008
    Messages:
    2,415
    We've talked about it briefly when we talk about why it's so important to take care of D the best we can. We don't go into details but just say that if we don't take care of things in the long run you could hurt your eyes or your feet or other places.
     
  7. hypercarmona

    hypercarmona Approved members

    Joined:
    Jun 18, 2007
    Messages:
    698
    I was 15 when my mother had an elderly type 2 friend explain his diabetes complications (amputed foot, nearly blind, heart trouble, etc.) Then when I was 18, DH and I found out we were going to have a baby, but unfortunately I had a miscarriage. The OB that saw me that day took time out of his busy schedule to thoroughly explain to me all the pregnancy complications diabetes can cause, the sum of which was that it was my fault the miscarriage happened and how other bad diabetes things would happen if tried to get pregnant without his permission. (This despite the fact that my A1c was fine.) Oddly enough, that was more traumatizing than seeing someone's amputation. Enough so that I was overwhelmed with dread both times I became pregnant again.

    I've since tried to read as much as I can about diabetes, and have learned that there are many more factors that determine complications than just being a "bad" diabetic, many of which we cannot control. Sometimes a complication happens despite our best efforts. I'd rather have heard that at 15 than the blame that came with talking about that type 2's complications. (ie. complications only happen to those who don't care about their diabetes/are a bad diabetic/have high blood sugars all the time, which is not true; or complications only happen to those who've had diabetes for a very long time, which is both not true and out of their control. If they're one of the unlucky few who develop retinopathy after only 10 years of "normal" diabetes management, they're left wondering what they did wrong. It would make it more difficult to cope.) It's easier to just say that we need to try our best to do what we're supposed to do and aim for good overall health.
     
    Last edited: Sep 1, 2010
  8. sarahspins

    sarahspins Approved members

    Joined:
    May 5, 2009
    Messages:
    2,205
    I agree with this SO much. I am 10 years into this, and I have no complications now, but I know that my good control only helps to reduce the risk of developing complications.. it can't eliminate it, no matter what I do. I have a disease, and that disease as progressive effects.

    I think that your CWD's will get enough "second hand stories" of some distant relative of a friend who lost their leg, their eyesight, went on dialysis, etc, that using "scare tactics" is absolutely the wrong approach. Personally I'm tired of hearing about Aunt Pearl who went on dialysis, or Cousin Alex who lost his legs bit by bit before eventually dying from sepsis.. because I don't personally feel like those things are veru likely to happen to me, and I think it's VERY unfortunate that most people's immediate associations with diabetes are truly that negative. You don't often hear "oh yeah, so-and-so has diabetes, they're taking really good care of themselves and doing super!" - or at least, I haven't heard many of those, compared to the "horror stories" :(

    Being open and honest about the possibility of complications is really the only thing you can do... take your child's lead - just answer the questions they ask.
     
  9. Lisa P.

    Lisa P. Approved members

    Joined:
    May 19, 2008
    Messages:
    5,380
    I'm very sorry for your loss and find it inspiring that you didn't let that bad doctor drive the decisions in your life.
     
  10. Lisa P.

    Lisa P. Approved members

    Joined:
    May 19, 2008
    Messages:
    5,380
    I think it's a good topic.

    Not much to say since Selah's too young for any of that, but I'd guess I'll use the same guidelines as with sex and money -- you answer their questions, honestly, as they come up, and don't make the question bigger than it is (we've all heard the one about the kid who asks him mom "where did that baby come from" and she went into the whole 9 yards, at which point he says, "I just meant, Kansas or Michigan". ...)

    I'm firmly in the camp that says I do not believe in using information about complications to try to enforce a specific behavior. A good underlying understanding of diabetes will naturally influence behavior, but that has to be an internal and free processing.
     
  11. StillMamamia

    StillMamamia Approved members

    Joined:
    Nov 21, 2007
    Messages:
    13,195
    I am sorry. I can't believe the insensitivity of the OB.:(

    We've come close to having to explain to my son about the complications. Mostly because FIL doesn't have a sensitivity radar. He has, on a few occasions, spoken, in front of my son, about so-and-so's sister who lost her toes and is losing her sight because of badly controlled T1 D. My kid asked what was grandpa talking about and I couldn't bring myself to tell him the truth. I said grandpa was just talking about someone he knew, but that it had nothing to do with him (my son, I mean). I guess I bailed out, but just the situation was not the best and I seriously couldn't bear the fact that my kid could have nightmares about it, kwim?

    I guess there never is an appropriate situation, but I will wait for the questions and answer them as honestly as I can, without using scaremongering tactics. I hope I succeed.
     
  12. kiwimum

    kiwimum Approved members

    Joined:
    Mar 14, 2007
    Messages:
    1,360
    I really think that this conversation depends on a few things, such as the age, maturity level, how your family works and things like that.

    For us, Tyler was 11 and our family is very very open and honest about lots of things, so Tyler did get told things, but only if he asked and in terms he could understand.

    Now as he gets older, the definitions of complications get more in depth and we don't use it as a scare tactic. We are definitely a 'it is what it is' type of family and we see no point in hiding stuff from him. He is more than capable of googling so if we don't tell him, he'll just find it out for himself.

    But at the same time, we have always stressed that we are doing everything in our power to TRY and prevent those complications.

    As for your situation, he is still young enough that you have the luxury of bailing out at the moment. But the time will come when you won't be able to (and I know you know that!:)) so now is probably a good time to be thinking about what you're gonna say!:)
     
  13. kiwikid

    kiwikid Approved members

    Joined:
    Dec 29, 2005
    Messages:
    3,011
    We started last year at age 8 because Rachel had to start taking an ACE inhibitor for Microalbumin.. After the kidney scan she wanted to stop taking them because the specialist said the scan was normal. I explained that she would be taking them forever to stop the effects diabetes can have on her body..
    If we hadn't had to do the kidney thing then I doubt that I would have said anything yet.
    I changed this story into my own gentle words and she seemed to understand about the idea of Diabetes nibbling away at different parts of her body. She actually LOVED this story!
     
  14. bgallini

    bgallini Approved members

    Joined:
    Feb 23, 2008
    Messages:
    3,950
    Alex was 15 at dx and various Drs and such have mentioned complications all along. I'm sure we chatted about it some early on. I do remember he joked about being that grumpy old man who yells at kids to stay out of his yard....with one leg and a patch on his eye. I imagine for him, though, the ED commercials are more of a concern.:(

    If he was younger, I would address things as they come up, like others said. I woudn't use it as a threat....if you don't take care of yourself, this will happen. But I'd probably say, 'but you probably won't have these problems b/c we take good care of your D.'
     
  15. OSUMom

    OSUMom Approved members

    Joined:
    Sep 10, 2006
    Messages:
    5,324
    I wasn't going to respond because my son was diagnosed at 18. Then something dawned on me. I remember when he was diagnosed he said well I'm going to die 15 years earlier than I would have. That was just a statistic he had learned in a health class at some point in his public school education.

    My instinct is to not use fear in educating based on a normal situation and instead emphasize in every day life taking care of your body, being healthy for all kids, blah, blah, blah... ;) However, now that I think about it - at some point if your kids are in school (not homeschool), they probably will be having a class that brings up diabetes. Let's assume the instruction won't be entirely clear and spelled out like we would have it. :p It might be a good idea for kids to hear correct but positive messages from parents first. I don't believe as long as my son takes care of himself as he is now that his life will be shortened by 15 years. I would want him to know that.

    Just my thoughts on the matter.... :cwds:
     
  16. TerpSteph

    TerpSteph Approved members

    Joined:
    Apr 24, 2008
    Messages:
    995
    ^ Agreed!

    Matt was 16 at diagnosis and he has always known that there is a possibility of complications because of diabetes. We've tried to stress that taking good care of himself would give him the best chance of living a long, healthy life. We also pass this message on to our younger non-D son.
     
  17. Christopher

    Christopher Approved members

    Joined:
    Nov 20, 2007
    Messages:
    6,771
    I wasn't going to respond either, but this comment hit home for me. TONIGHT, I was looking at an article online about the Atkins low carb diet and how a new study shows that it increase morbidity. Danielle came up behind me and said "I am going to die earlier because I have diabetes". I told her that this article had nothing to do with that. She said "Dad, I know, but I am still going to die early". I was kind of stunned and just said, we are doing everything we can to keep you healthy and you are going to live a long time.

    I don't know where she got that information or how. I remember reading in a book right after dx that the lifespan of someone with diabetes is 13 years less than someone without it. But it was a jolt to realize she was thinking like that at 11 years old.

    I hate this disease.
     
  18. kiwimum

    kiwimum Approved members

    Joined:
    Mar 14, 2007
    Messages:
    1,360
    Oh Chris! This broke my heart:(

    We too have had moments like this and it really hurts deep to know that our kids are thinking like this. Sometimes I wonder if while we think we are protecting them, they in fact are protecting us too - in their own way. (Did that sound right??)
     
  19. Omo2three

    Omo2three Approved members

    Joined:
    Jul 11, 2008
    Messages:
    1,663
    After awhile we kept getting odd comments about the complications of D and Amb overheard them, so we did discuss complications of D, but not with the intention to scare her but to help her deal with these comments from people who just don't think before they talk.

    I wanted her to see what she could do...that made me google famous people with D, Mary Tyler moore...and healthy athletes, and see this person is doing great things and living a healthy life ...with D, and this is possible.
     
  20. LenasDad

    LenasDad Approved members

    Joined:
    Sep 4, 2010
    Messages:
    120
    Well, the Pink Panther book had something in it about checking your feet, and at our first followup the nurse stated we should let Lena's eye doctor know about the D. So dd started having questions right off the bat... Smart kid, always asking questions (she's 13). But she didn't want the doctors to explain it to her - she asked me to look it up, digest it for her and explain it.

    So after scaring myself (never knew just how bad this disease could be without effective treatment) I simply explained to her that years of high bs cause a lot of "wear and tear" on the whole body. And she was satisfied with that answer.
     

Share This Page

- advertisement -

  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.
    Dismiss Notice