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When to Tell a Teen about LT Complications

Discussion in 'Parents of Teens' started by ppalmer, May 28, 2011.

  1. ppalmer

    ppalmer New Member

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    Hi - my son Andrew (13) was diagnosed two weeks ago. He is an amazing young man and handling it all very well. I wonder when it might be appropriate to talk about the long term complications of type 1.
     
  2. kimmcannally

    kimmcannally Approved members

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    I think it totally depends on the child/teen. I've told J repeatedly but that is because of his personality and the fact that he has a hard time accepting responsibility for anything. I want him to understand what his refusal to take care of himself can bring about. I won't be around forever to bolus him, weigh his food, etc. and he HAS to learn to do that on his own. I often wonder if I will outlive him. :(
     
  3. JeremysDad

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    Hi and welcome to this group. In my opinion, I would hold off on telling your son about the complications of diabetes. I'm sure you are both overwhelmed at what just happened to him. There is so much to learn that throwing another curve-ball at him at this early stage of the game is not fair to him. Let him get used to his new lifestyle of checking his BS and taking his insulin. Long term complications are not inevitable. It all depends on how your son takes care of himself. Having some bad days, very high BS or some lows, will not adversely affect your son in the long term. It's the constant high BS over a long period that leads to complications.There is a member of this group - Richard - who has been a diabetic (T1) for 65 years. If he can do it, we call can.

    Take care and please come back and ask questions. We are all here to help each other.
     
  4. Amy C.

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    I wouldn't mention it for quite a while, especially if he is getting with the program and doing what is asked of him to manage his care. It is when they need to start doing more of their care and don't that this ought to be mentioned.

    This doesn't usually happen to the newly diagnosed at 11.

    It sounds like you may need to worry less about the long term complications -- there are lots of people who grow up to have perfectly normal lives, with diabetes in the picture. Start looking for these on the web.
     
  5. Jordansmom

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    I think it's important to have a conversation about complications right away. They are going to hear things from people other than you anyway. There are strangers, friends, and family who will feel the need to tell you and your child every horror story they have ever heard about diabetes. Then there are well meaning pediatricians, dentists, and opthamologists who will all give there own lectures about why good diabetes care is so important.

    Because they'll hear things anyway, it's important that you are able to help them understand what the real risks are, that people can be ignorant or just outdated with their info and especially, that if they do their best to take good care of themselves, none of the things they hear about D may ever happen to them. They need to hear about people with D who live happy, healthy lives, have careers and children without any of the complications you've had to explain to them. End on a very positive note.
     
  6. dejahthoris

    dejahthoris Approved members

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    No. I want my son to enjoy what is left of his childhood as much as he can. He is gathering it anyway slowly without me telling him, as he has had his feet checked at the endo, questioned regarding eye exams, etc. He realizes enough about the potential seriousness of his condition. By the time he is ready to go off on his own I will make sure he has all the resources he needs to be independent whether it is regarding diabetes, education, money, taking car of his car, etc etc etc just like we did with our grown children.
     
  7. bnmom

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    I don't plan to talk to my teen about potential long term complications anytime soon. If he stops taking care of himself, then I will.

    I have cautioned him that everybody and their brother wants to offer advice and some people feel the need to share awful stories - and we just have to keep in mind that people mean well, but their stories don't apply to him and are usually half-baked or about type2.

    I want to protect as much of the carefree innocence of childhood as I can, and for as long as I can. It's my job to worry about that stuff for now, his job is to be a kid.
     
  8. TheFormerLantusFiend

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    You should respond to what he asks or wants to know, and you should comment when the two of you hear or see something that references complications. For instance, I just got a flier from some diabetes organization about how no age is too young for diabetes related hearing loss :rolleyes: If you see a commercial about ED, that would be a good time too.
    Another good time is if he asks why correct highs, etc. Probably a doctor will bring it up at some point, as well.
    Your kid will not have to be a genius to want to know why he's getting an extra eye exam, foot exam, etc.

    I was diagnosed at 17 and what I knew about diabetes at that time included information and misinformation regarding complications. One of the thoughts I had pretty early on (as in, I thought about it while still in the hospital) was that I was going to go blind and die young. I'm pretty sure I'd heard about them by thirteen but I'm not sure.

    I think this conversation might also be different depending on how sick your kid was at diagnosis. I was told when I was diagnosed that I was lucky to still be alive with the numbers I was running (and I was). There were immediate concerns about whether I had retinopathy at the time of diagnosis- so no hiding there.

    So, with a teenager, you should probably acknowledge the possibility of complications, mention that they do have to do with how much high blood sugar (and maybe low blood sugar) a person runs over a long period of time, and see if your kid has any worries you can (hopefully) show to be myths. I've known a few type 1s who expected to die very young.
     
  9. JeremysDad

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    PPalmer, your son is 13. He might be handling it well but there are a lot of emotions a teen will withhold from parents. You might not realize that he may be suffering emotionally because of this burden that has been placed on him. If he were my son, I would not want to create any more mental anguish at this point in time by telling him he could develop neuropathy or lose his eyesight or become impotent or worse. These are worst-case scenarios. With good management, you dramatically lessen the chances for complications.

    Yes, you should explain to him what the ramifications of poor diabetes management can do to him but do it when you know for sure that he has gotten over the initial shock of diagnosis. 2 weeks is just too short a time.
     
  10. obtainedmist

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    If your son is computer savy, he can scare himself silly reading about complications online with just a google search. I guess the approach that we take (and our endo as well) is that with good care, there is no reason that you will experience complications. Random people will eventually tell him about their grandma with amputations or blindness. I think teens need to know about the standard of care in the past and how it has evolved today so that they can put these "stories" into perspective. Also, I feel they need to know the difference between a Type 2 diagnosis and a Type 1 diagnosis. As we know, people can have Type 2 for many years without knowing it if they don't get their blood tested. Sometimes by the time they are diagnosed, they already have complications. Not true with Type 1 where the onset is very dramatic and sudden.
     
  11. fredntan2

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    Never...way too soon
     
  12. Christopher

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    Welcome to the site.

    I would let everyone settle into the daily tasks of living with diabetes first. Let him know that if he ever has any questions, or if he ever hears something he is concerned about, he should come and talk to you. I don't think I would get into the long term complications this soon after diagnosis. But you know your child best and only you know what he may or may not need to hear.

    Good luck...:cwds:
     
  13. KatieJane'smom

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    I agree. My dd's endo talked to her about complications the very first visit she had with him after diagnosis and coming home from the hospital at age 11. He asked what she enjoyed doing the most. She said drawing and painting. He told her he wanted her to be able to enjoy doing that the rest of her life and she would need to protect her eyesight, etc. in order for that to happen and he explained the importance of good diabetic care. I will say that she was a very mature 11 yr. old so he might have handled a different 11 yr. old differently. They just had a conversation about it - not a lecture. He then went on to tell her that there was nothing she wouldn't be able to do if she didn't have diabetes and introduced her to one of the CDE's who was diabetic and they had a nice chat.
     
  14. wilf

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    I agree. Unless it comes up in another context (in which case you have to address it) I'd wait a few months. Just the basics of D management are a lot to deal with for a 13 year old.
     
  15. emm142

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    I was diagnosed at 14 and made gently aware of complications straight away. (Perhaps notably, I'm generally considered to be mature for my age.) It was nothing too hardcore, just "we aim for these BG levels because over time high BGs can affect your health".

    Honestly, once I'd been on an insulin drip and I was no longer seriously ill, and particularly once my ketones were gone, I was in the 400s and I felt fine. I felt like I'd recovered from how seriously ill before dx. When my BG dropped to 200 and below, I felt sick, shaky, and generally low. If I hadn't been aware that highs held any risk, I would just not have understood the point in getting lower. So.. I think that if you are doing your son's D care, he probably doesn't need to know about LT complications yet. But if he is expected (as I was) to self manage, he might need a very brief and non-scary explanation of WHY he's doing it.

    Additionally, I think the best time to do complication talk is when everything is going fine.. Threatening complications when your child is struggling is really unhelpful (not saying you would do this, just a general caution).

    Also, it's best for him to learn about complications gently and not have them thrown in his face by someone who doesn't really have a clue.
     
  16. Jeff

    Jeff Founder, CWD

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    I'm going to weigh in on this very important topic with some science that I believe should change how everyone views and discusses the potential for complications.

    Dr. David Harlan, a leading researcher and physician working to cure type 1, has often said that the health of someone with type 1 comes down to three things: kidney function, kidney function, and kidney function.

    Historically (think prior to 1980), according to a presentation by Dr. Bruce Buckingham, pediatric endocrinologist at Stanford, about half of people with type 1 would develop renal failure within 10-20 years of diagnosis. Those were not very good odds.

    However, that has changed, and changed dramatically. In 2006, a very interesting study was published that looked every child diagnosed after 1980 living in Sweden. The key finding is illustrated here, showing the incidence of end stage renal disease up to 23 years after diagnosis:

    [​IMG]

    What stands out for me? For kids diagnosed under the age of four, not one person developed ESRD during the 23 years of the study. Not one. (My daughter was diagnosed when she was 24 months old.) The highest incidence was in the kids diagnosed between the ages of 10 and 14, and for them is was about 2.4%.

    So in a generation, we have gone from essentially the flip of a coin to get ESRD and it being rare.

    Link for this study:
    http://care.diabetesjournals.org/content/29/3/538.abstract
    http://care.diabetesjournals.org/content/29/3/538.full.pdf

    There are other studies like this.

    The key point is that developing complications is absolutely not inevitable. Given the standards of care today, which include frequent glucose monitoring, CGM if you can get it, MDI or pump therapy, more predictable insulin analogs (both rapid and long acting), as well as renal protective medications (ACE inhibitors and ARBs), our kids should not develop kidney disease.

    And, if they don't, there is even better news from a study publised in November 2010. Quoting the study conclusion:

    "... type 1 diabetes patients without renal disease achieve long-term survival comparable to the general population."

    Link to the study:
    http://www.ncbi.nlm.nih.gov/pubmed/20665208

    So when I am asked about what to tell people about complications, I generally say something like this.
    If you take care of yourself, and stay mentally involved in your care, there is a very good chance that you will never develop complications. Success in living with type 1 is about being involved, not about the results of any given day. It's an "A for effort" kind of thing, over the very long term. But make no mistake -- type 1 is relentless. If you "check out" for a couple years, there are consequences. So stay engaged, use the latest tools and medicines, and find emotional support to help you. Is is easy? No. Is it possible? Yes.
    The bottom line is that complications are not inevitable. That is the science.
     
  17. nanhsot

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    While I wouldn't introduce it in the midst of all these current emotions you both are having, I would be honest and matter of fact about it fairly soon. I believe teens are at real risk of ignoring their diabetes and I feel it very important that they understand the true reason we strive for good numbers.

    The teen years are very tricky, and a boy at 13 is still going to be on your side (a girl, ha, not so much!) and trust you. I would rather my son hear it from me than random strangers or even doctors. And they will hear it from random strangers and doctors. He will need to go to dentists and eye doctors regularly, so he needs to know why. He will have people tell him about their uncle whose leg was cut off...he will need to hear FROM YOU that it is not inevitable that this will happen to him. Etc.

    For my son it was never a sit down conversation, it's been an ongoing dialogue. Not a scare tactic or "if you don't get that number down you'll lose a kidney" type thing, but more of a thread into everyday life to reassure them that complications do happen but if they stay on top of things they will not happen to them.

    Bottom line: begin to educate now, but slowly and without fear tactics. Reassure that complications are NOT inevitable but that if they ignore their diabetes (and I know several teens who have done so) they can.

    Diabetes camps are pretty good at educating, at least his was. They do little medical quizzes and peppered into that are complications, presented in a medical fashion.

    This is actually a very difficult topic for me because I work with many people on dialysis, with amputations, heart issues, etc, from Type II. So for me it's just been an ongoing conversation. Avoid being overly dramatic or frightening him, but be open and honest.
     
  18. TheFormerLantusFiend

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    Jeff, I think your post needs a clarification of the difference between kidney disease and kidney failure. I cannot find any reference to diabetics ever having had a kidney failure rate of 50% within 20 years of diagnosis- I can easily find references to diabetics having more than a 50% rate of kidney disease within 20 years of diagnosis.
    The article you linked to on renal disease being the main predictor of longevity in type 1 diabetics should be given the caveat that two thirds of the study participants had kidney disease.
    Rates of kidney failure in white diabetics under 45 in the United States- the majority of whom have type 1 diabetes- did not change significantly between 1984 and 1996. http://www.nature.com/ki/journal/v67/n5/full/4495233a.html
     
  19. zakksmom

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    Jane, You could not have said this more beautifully... you read my mind. :0)
     
  20. obtainedmist

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    Thanks for the info, Jeff. It's comforting to read the studies in addition to being told the information from the endo.
     

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