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Author Topic: multipe siblings more than two chances  (Read 6247 times)

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paul

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multipe siblings more than two chances
« on: September 23, 2012, 01:52:53 PM »
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  • Hi my nams is paul anx i am currently with my 13 yr old daughter in the hospital newly dx. I alfeady ha e a 6, and 16 yr old type 1 as well.

    I am trying to find some statistics and i am diligently searching and can only find a finland study but it is not about 3.

    If you know any resources or have information please let me know. Endo dont know.

    I have 5 daughters and 3 are type 1. Wtf?
    Thanks
    paul

    Offline HD

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    Re: multipe siblings more than two chances
    « Reply #1 on: September 23, 2012, 02:13:38 PM »
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  • Hi Paul.  I just wanted to say that I'm sorry about your daughter's dx. 
    Obviously you are well versed in T1D, but I know that doesn't make it any easier.

    I don't know of any specific studies, but we do have some other members here with more than multiple children with T1D.  Maybe they can offer some info.
    Heather
    mum to Campbell (18) dx on 20 July 2007 Pumping with the t:slim & Dexcom, and Tom (14) non-D 



    Offline andrea

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    Re: multipe siblings more than two chances
    « Reply #2 on: September 23, 2012, 02:27:41 PM »
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  • I don't recall reading any information, but I suspect it's all speculation, as with other "causes" within d literature.  I have a friend locally who now has 2 of her 3 children with d (1 son and 1 of her 2 daughters).

    Sorry for the 3rd dx.

    Mom to Annelies, 14 (Dx 18 Mar 08~Pumping MM Oct 08-May 12, Omnipod May 12-Aug 13. tSlim Aug 13+ ~Dexcom Oct 11), Katy, 18 (non-D) and Jory (non-D/US Navy)
    God created wine to keep Army Wives from taking over the world
    My blog

    Offline LexisMommy

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    Re: multipe siblings more than two chances
    « Reply #3 on: September 23, 2012, 02:44:39 PM »
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  • I don't know of any stats either, but maybe your other 2 kids should do trialnet?

    My daughter's babysitter is type 1 and so are both of her siblings.. Her parents are 3 for 3.
    Kendell. Mom to Lexi (4 and dx 4/21/11) and Eden



    Offline sheeboo

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    Re: multipe siblings more than two chances
    « Reply #4 on: September 23, 2012, 03:05:29 PM »
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  • I don't know of any stats either, but maybe your other 2 kids should do trialnet?


    I am so, so sorry Paul.  I agree with Kendall. Contact Trial Net. If anyone has answers, they do.
    http://www.diabetestrialnet.org

    The Finnish study is the one I've seen referenced the most in these conversations: http://diabetes.diabetesjournals.org/content/54/2/563.long
    Brie - mom to Noor, 11yo DX: 2/29/12 Omnipod and Dexcom

    Offline paul.t.hinchliffe

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    Re: multipe siblings more than two chances
    « Reply #5 on: September 23, 2012, 04:25:54 PM »
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  • Thank all of you. Me and my wife are devastated .  It must be rareto have 3 typ1 kids. I really dont understand. I have read about trialnet and anything else i can find. Our 16 yro was dx at 6 and our 6 yro was dx at three.

    We only knew of two other families with three.

    I guess in a way i need to know just how unfairr this is to my family.

    My two other nondx girls are a wreck emotionally.

    I just want statistics.

    I am angry and cannot beleive it.


    Offline LexisMommy

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    Re: multipe siblings more than two chances
    « Reply #6 on: September 23, 2012, 04:32:29 PM »
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  •  <hug> I am so so so sorry. I cannot imagine your pain and frustration. Although the results aren't necessarily conclusive, your other two girls can be tested for antibodies. Our daughter's babysitter's parents were devastated when the third child was diagnosed in April. Both of the other kids were diagnosed at age 2, but the youngest made it to age 10. :( it's a horrible disease and its not fair.
    Kendell. Mom to Lexi (4 and dx 4/21/11) and Eden



    Offline paul.t.hinchliffe

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    Re: multipe siblings more than two chances
    « Reply #7 on: September 23, 2012, 04:41:15 PM »
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  • Do you know if they partucipate in any trials or may have data?

    Offline Lukesmama

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    Re: multipe siblings more than two chances
    « Reply #8 on: September 23, 2012, 04:43:58 PM »
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  • I know that Meri has 3 of her 4 boys dx. Her website is Our Diabetic Life. 

    I am sooo sorry for your family.  That is such heartbreaking news.  <hug> <hug>
    Amy***Mom to Alex-21, Kayla-21, Austin-19, Luke-18 MDI (DX 09-13-09) & Kelsea-16

    "Let go or be dragged."

    [img]http://www.type1parents.org/SimpleTickers/img.php?pa=6

    Offline LexisMommy

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    Re: multipe siblings more than two chances
    « Reply #9 on: September 23, 2012, 05:23:11 PM »
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  • Do you know if they partucipate in any trials or may have data?

    They don't and in fact when the oldest (18) was diagnosed, they told them it would be like winning the lotto twice to have another kid with it.
    Kendell. Mom to Lexi (4 and dx 4/21/11) and Eden



    Offline JamieP

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    Re: multipe siblings more than two chances
    « Reply #10 on: September 23, 2012, 05:38:00 PM »
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  • Hi Paul. I'm so sorry this is happening to you. No it is not fair at all. I know TrialNet has been mentioned. Their study is done in connection with the DRI and it tests siblings and other family members for the marking autoantibodies that can be present in T1. They do have interventional studies available if anyone should test positive for any of these autoantibodies and they will continue to retest siblings every year so they can catch the antibodies right away of they start to develop. We live in Miami and met personally with the woman who has been in charge of this study since its inception. She is a T1 herself and is an amazing wealth of knowledge.  Her name is Della Matheson. I will PM you her phone number and email. If anyone else wants that info, please let me know.  Just don't know if I should just put it out here???  Anyway, she is so nice and would be more than happy to talk about your situation with you I detail.

    Again so sorry!
    • Jamie Perez
    Jamie Perez
    Mom to Tyler, 16yrs, T1dx 4/21/12
    Dexcom G4 11/1/12; Omnipod 2/1/13
    Mom to Kate, 11yrs, NonD

    Offline paul.t.hinchliffe

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    Re: multipe siblings more than two chances
    « Reply #11 on: September 23, 2012, 05:52:52 PM »
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  • That would be great! My email is mixermfg@hotmail.com

    Offline andrea

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    Re: multipe siblings more than two chances
    « Reply #12 on: September 23, 2012, 06:05:11 PM »
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  • Paul, it is unfair and you have every right to be angry.  I would be too.

    Mom to Annelies, 14 (Dx 18 Mar 08~Pumping MM Oct 08-May 12, Omnipod May 12-Aug 13. tSlim Aug 13+ ~Dexcom Oct 11), Katy, 18 (non-D) and Jory (non-D/US Navy)
    God created wine to keep Army Wives from taking over the world
    My blog

    Offline shortstopmom

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    Re: multipe siblings more than two chances
    « Reply #13 on: September 23, 2012, 06:33:43 PM »
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  • I don't have any answers for you, but I just wanted to say that I'm sorry.   <hug>  Type 1 sure doesn't play fair.
    Nancy
    DX March, 1971 (45 years). Pumping with "Forrest Pump" for 10 years.  Lovin' my Dexcom G4 "Lt Dan".  Mom/Stepmom of 7, grandma of 10.

    Offline andrea

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    Re: multipe siblings more than two chances
    « Reply #14 on: September 23, 2012, 07:26:39 PM »
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  • Just a reminder, just because you do trial net does not give you any indication that a sibling will or will not get d.

    Straight from the letter we received yesterday:

    "The result of Katrina's screenting test was negative.  This means that no diabetes related autoantibodies are present at this time.  This is not a guarantee that Katrina will never develop diabetes.  It does mean that Katrina is currently at a lower risk than if the test was positive."

    Antibody status can change, but presence of antibodies doesn't mean there will be a presence of d.  Which is why they ask for an annual retest.

    Mom to Annelies, 14 (Dx 18 Mar 08~Pumping MM Oct 08-May 12, Omnipod May 12-Aug 13. tSlim Aug 13+ ~Dexcom Oct 11), Katy, 18 (non-D) and Jory (non-D/US Navy)
    God created wine to keep Army Wives from taking over the world
    My blog



     


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