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Stastically speaking...

Discussion in 'Parents of Children with Type 1' started by quiltinmom, Nov 14, 2010.

  1. quiltinmom

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    What are the chances of my other children developing diabetes? My oldest was DXed at age 7, so it's hard not to wonder if our other children will also get D.

    I have been going back and forth about doing TrialNet, not sure if I want to know, or if it will make me worry more if one or more of my kids turns up positive. On the other hand, a heads-up might be helpful, to know which kids to watch more closely. Not that I don't watch for signs in all of them. :rolleyes:

    What do the studies say about siblings developing D? Is there a way to know how hereditary it is, or if it's just a "fluke?" My DH's cousin's baby was recently DXed, and DH has a first cousin on the other side of his family who id type 1, but I don't think it's very common in either of our families.

    And while I'm at it, what about children of Type 1 parents? (A few weeks after DX, he asked about if his kids would have D. I didn't know.)

    What do you think about statistics and how it relates to individuals?


    Thanks!
     
  2. TheFormerLantusFiend

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    Siblings of kids with diabetes have a risk that varies based on other factors (your ethnicity, his age at diagnosis, his antibody status) but assuming that you're in a fairly high risk population, I'd put his siblings' risk at about 10% each by the time they're 40.

    His kids have about a 10% chance of getting type 1, assuming their mother doesn't have it (if both parents have t1, the risk is at least 25% and probably more like 50%). I would tell him that his kids probably wouldn't have diabetes but that you couldn't say for sure. At age 7 that's about what I'd expect him to be able to understand.

    People with antibody negative type 1 diabetes are considerably more likely to have relatives who develop type 1 diabetes, but assuming those relatives are also antibody negative, it's harder to predict which ones of them will get it.
    Relatives who are antibody positive are more likely to develop type 1 diabetes.

    And all of this assumes that the rate of type 1 diabetes will not drastically rise or fall in the next twenty years, an assumption I would not want to make.

    EDIT: Assuming you are talking about kids you already have and their risk, I think the most important statistic is that of all people diagnosed with type 1 diabetes, about 1 in 4 is diagnosed in DKA, very sick. Of people with an immediate family member already diagnosed- a brother, sister, parent, or child- only 1 in 100 is diagnosed in DKA. You now know what to look for.
     
  3. Kimby

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    I think you will always worry about your other children. If they drink too much, urinate too often, or even catch a stomach virus... I've checked every one of my kids at one time or another. Most of us have. We can testify more than any doctor that non-D kid's BG goes up when they are sick, because we've tested it. Statistically, though, the odds are not that high. There was a recent thread about it that I'm sure someone will post with actual numbers.

    There are lots of opinions on Trialnet, and you will have to decide what is best for you and your family. I let my kids partipate if they wanted to. My daughter signed up as soon as possible. She wanted to be a part of science in action & do everything she could to help people learn about the disease. She has been positive for 4 of the antibodies since her first screening over two years ago. The boys signed up one by one, and have all been negative. Trialnet watches Kaitlyn & tests her antibody levels & gives her an oral glucose tolerance test every six months. If she qualifies for a prevention trial, they will let her know. She is not in the subgroup that benefits from oral insulin. They treat her like a hero, and she has enjoyed participating. Her last OGTT was terrible & painfully close to a diagnosis. I admit I grieved when I found out she was positive in Spring of 2008. I grieved again when I found out she had impaired glucose tolerance. I grieved again this summer when her 2 hour BG was 194. I'm terrified of her next test. I can't judge anyone who says they don't want to know, because there have been times it has been a burden. But yes, I'm glad we did it. I'm glad that Kaitlyn is being monitored so closely. I'll grieve again when the diagnosis is real, but I'm glad to have the warning. I'm pushing the vitamin D!!! I can see where it depends on the family & the kid. Kaitlyn wants to be in the study and wants to make a difference. She says she doesn't want diabetes, but she isn't afraid of it either. So far, her A1c has been a steady 4.8. If they figure out how to extend a strong honeymoon, I want to extend hers just the way it is. Do I worry about her more? Absolutely! But I've had time to prepare myself so I can be there well for her if/when the time comes. Do I worry about the boys less? Others will point out that I shouldn't, but I do. Trialnet has helped researchers learn so much about how the disease develops & I'm a fan!
     
  4. tiffanie1717

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    I think I heard that it's a 20% chance of a sibling getting it, but that could be the percentage to something else, too! :) haha

    As far as trialnet goes, while I am definitely not against it, we chose not to do it. Since the trialnet results are not conclusive and can change depending on when the test is given, I didn't feel that it gave me enough confidence that it wouldn't happen anyway. If trialnet said that one hundred percent for sure you child will or will not develop D, then I would do it in a heartbeat. That being said, a lot of people have learned some interesting things and it gave them comfort when the results were negative. So if the results would give you some measure of peace, then go for it!
     
  5. hawkeyegirl

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    Nope, it's more 3-10%, depending on the risk factors that Jonah mentioned. The younger the first child was diagnosed, the greater chance a sibling will be diagnosed. And oddly, brothers of an index case are slightly more likely to be diagnosed than sisters.
     
  6. Flutterby

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    The furthar away you get from the first diagnoses the lower your chance becomes, I don't know how much it goes down by, I was just told the longer it is, the less of a chance..

    Has anyone had an older sibling diagnosed after a younger sibling? The second diagnoses that I've heard, all the siblings have been younger.
     
  7. Kaylas mom

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    Can you explain this more? So Kayla had positive antibodies so it is less likely her relatives will develop type 1?
     
  8. TheFormerLantusFiend

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    In a number of studies, children with type 1 diabetes with antibodies were less likely to have relatives with diabetes. Here is one such study: http://www.ncbi.nlm.nih.gov/pubmed/20863361
    It wasn't aimed at looking for who had relatives with type 1, but it does contain this gem: "Six of 22 (27%) autoantibody-negative patients had first-degree relatives with diabetes compared with 22 of 237 autoantibody-positive subjects (10%)"

    As for families in which the older sibling is diagnosed after the younger, the following forum members have children diagnosed before their older siblings: BeerMargaritaMom, bonhamx4, Carseatmama, DonnaGriff, greg 88, Hockeygirl, idahomom, Jennie Clayton, Kim Robertson, lisalotsamom, luvmy3kidz, luvmy3mckennas, lynnh, melissajm, Mike&Dans.Mom, momof2D, momof3princesses, muddymessalonskee, rcj176, tiffanie1717, Tracy B., TwoTypeOnes.

    It's also not rare for parents to be diagnosed with type 1 after their children are diagnosed.
     
  9. Kaylas mom

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    Thanks Jonah, I had no idea.
     

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