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A Few Questions?

Discussion in 'Introductions' started by Daddyto4, Apr 12, 2012.

  1. Daddyto4

    Daddyto4 Approved members

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    My daughter was diagnosed Type 1 last year. My other kids (and me) are worried; Without blowing sunshine up their ***es, how do I calm their fears (and my own)?
    My baby girl in now on a monitor, so that's better, and is going on a pump soon (by the end of the month). We've been vigilant (to the point of maybe a little weird), and she's mostly adjusting well.

    Advice?
     
  2. Becky Stevens mom

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    hello Dad and welcome. It is very normal for everyone to have fears after their child or sibling is diagnosed with type 1. It takes time for everyone to adjust to the changes that the diagnosis brings, not just to the child with diabetes but the whole family. If the other kids are fearful of getting diabetes too, let them know that the risk is very small. It is a bit higher then for children who dont have a sibling, I believe its 4-6% compared to about 1-2% for average kids. So still very low risk. Also, let the kids know, especially your daughter with diabetes. That she can absolutely do anything she wants to in life and diabetes need not ever hold her back. Any dream she has or goal she wants to work for wont be off limits because of the diabetes. Maybe get involved in diabetes walks with JDRF, often there are famous athletes with type 1 or other famous people with type 1 at these walks

    In time, your daughter's diabetes will just become part of the families life. You will all learn to fit the diabetes into your busy lives and make it all work. i know at times now it feels like as if youre trying to fit an elephant in your living room but as time goes on it wont seem so;)
     
  3. zoomom456

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    Hello,

    You will all be okay. Diabetes is a family disease and it is completely normal for everyone to be nervous. My daughter feels better when she can help. My non D child is 6 and feels better just knowing she can get us when the CGM alarms. She has recently requested to learn to test her brother, and if he gives his permission, does so and reports to us. She keeps glucose tabs in her room and will get him one from her stock when he is low, although occasionally she munches on one too. The big things we pointed out to our non D child is 1) brother can still do everything he did before 2) We are giving the best care possible not only to your brother, but you as well 3) You did not do anything to cause your brother's diabetes - being mad at your brother will not make him sick. We also take our daughter out somewhere to talk every couple of months. She gets the opportunity to discuss /ask about she wants including diabetes. Having open discussions where she asks the questions and we answer lets us know what she is thinking and calms what she is actually worried about.

    If you have any specific concerns please post them! We are more than happy to help.
     
  4. TheFormerLantusFiend

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    Fears of what, in particular?
     
  5. Daddyto4

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    Right, so the question/fear is, "Is she going to die?"
    Intellectually, I know the answer is no, but try explaining THAT to a 14 year old sister, or to a 10 year old brother- Or a 35 year old daddy, for that matter.
    The 14 year old helps with the simpler tasks, and the 10 year old is very attentive (even caught a couple lows all on his own), but a want to really get it through to them that she is ok (and hopefully get it myself).


    EDIT: He's 10, not 9. Appologies.
     
    Last edited: Apr 20, 2012
  6. Connor's Mom

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    We are going on 3 years and I still have to remind my other 3 that Connor is just like them. It's usually after a bad low or a violent high that they (ok I) get those worried feelings. The best thing I have found to do is find the "normal things" that we have always done together and do them. Integrate BG tests like they have always happened and keep going.

    Take it one day at a time. You made it through the first year! The pump seemed to help my kids feel more normal about their brother because the calculations for his insulin are made in the pump. They don't need to see the insulin being drawn out or him getting his shot. Not getting his shots made him feel more in control of his disease too! He can count his carbs, test his blood and then he tells me what he is dosing for and he eats. If he is going out to play he asks if he should have a snack, suspend or if I want to set a temp basal. We are much more normal now but, it's been 3 years.:rolleyes:
     
  7. TheFormerLantusFiend

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    Maybe it would help to see lots of people who've had type 1 diabetes for a while who are not dead. Is there anyone in your area?
     
  8. Connie(BC)Type 1

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    We're all going to die, Type 1 or not. I'm 53, have been at this over 40 years, still alive and kicking(hard as I can), and very very healthy!
     
  9. Daddyto4

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    A few, and whenever the chance comes up we encourage her to talk. We were at a restaurant a while back, and our server it turned out is Type 1. She allowed my daughter to see the pump and examine it.

    I can say that, for a few months at least, I had this recurring nightmare. Without going into details, I find her dead. My 14 year old recently reported that she's been having trouble sleeping. It turns out there are several factors, but this is one of them. My 10 year old came out and asked me "What if her tubes get pinched" and a few other similar questions. (He's a bit of a worrier.)

    As I write, she's up in Portland getting her pump installed, so there ?should? never be a day go by without a least a little insulin, and intellectually, I know that lack of insulin is bad, excess insulin just as bad?

    So how do I explain to them? I've had talks with them, I have answered the questions I can? Do I just answer as-is for now, or uh? What?
     
  10. TheFormerLantusFiend

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    You might want to look at family counseling. The children's hospital I was diagnosed at offered it to my family, although we didn't do it. According to CWD polls, about half of families that try counseling find that it helps- my guess is that it has to do with the family and the counselor.
    You might want to learn more about diabetes, as a family. There are some autobiographies of people with diabetes in which the person does such seriously irresponsible things that I am reassured and a little surprised to find the person survived them. For example, a month after being diagnosed with type 1 diabetes, Ron Santo decided he didn't want to have diabetes, stopped taking his insulin, and went about two years before getting really sick. He's the same idiot who used candy bars to treat hypos (too much fat), and would go up to bat with an untreated hypo- he talks about having seen three balls coming and swinging at the middle one. Ron Santo died of some cancer entirely unrelated to diabetes, fifty two years after being diagnosed with type 1 diabetes.
    His autobiography For Love of Ivy doesn't contain anything sexual or violent and doesn't mention the complications he developed late in life. Nothing bad happens to him in the book, really.
    Some practical books about diabetes- like Think Like a Pancreas- might also be reassuring. Diabetes is less scary when you feel like you know what to do.
    Most books for children with diabetic characters are either nonfiction books with mostly basic information about diabetes- the only really good ones that I know of are out of date- or else they are fiction books in which the characters go into DKA or have horrible hypos and that sort of thing.
     
  11. Sarah Maddie's Mom

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    I'm not sure I understand all of the above - "installed"? :confused: and yes, too much insulin or too little are both undesirable.

    I highly, highly recommend that you buy and read Ragnar Hanas' book, http://www.amazon.com/gp/product/18..._m=ATVPDKIKX0DER&pf_rd_r=0SKP1RD979E5ESBFNC1G
    It will help you understand your dd's diagnosis and care and will help you know how to talk with your other kids.
     
    Last edited: Apr 26, 2012

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