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#1
11-03-2012, 07:54 PM
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Trial net program... Yes or no?
MUSC where we go for check ups is now part of the trial net thing. I have 2 other kids (age 6 and1) and I'm wondering if I should get them checked? And me and my hubby. We have a 3 year old t1d. I'm just worried if it comes out positive on any of us ill be paranoid . Any thoughts? What's involved with it, especially if +. I know it's not a definite thing I just want opinions!!
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Aidan - 5 non D Lucas 2- DX sept 27,2011. Starting pumping Jan 6 2011 using GREEN PING Lexie - born sept 22,2011, non D 
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#2
11-03-2012, 08:56 PM
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My thoughts were that I wanted to know AND be apart of any trials they might have that would either hold back the onset or lengthen the honeymoon phase should our son be antibody positive. My husband and I were too old to be considered anyway. Our son was negative, but I'm glad we did it and would have wanted to know either way.
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mom to Molly, 20, dx 7/9/10 Pumping with Animas Ping 11/10 Dave, 24, non D Wife to Bob...great guy!!
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#3
11-03-2012, 10:12 PM
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Thank you. I think we will do it. He has an endo appt on Monday so I will ask about it then and hopefully get myself and 1 year old checked.
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Aidan - 5 non D Lucas 2- DX sept 27,2011. Starting pumping Jan 6 2011 using GREEN PING Lexie - born sept 22,2011, non D
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#4
11-04-2012, 08:20 AM
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I would because of this post: http://www.childrenwithdiabetes.com/d_0c_1kc.htm
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8/2010 - 9/2011 MDI, Lantus & Humalog 9/2011- Medtronic Revel 723 & CGM 11/2012 - Dexcom G4 "Life is not waiting for the storms to pass, but learning to DANCE in the rain."
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#5
11-04-2012, 08:38 AM
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No for me -
We live near MUSC too and saw the posting about trial net being made available. My husband is type 1 and so is my 5 1/2 year old son.
We also have a ten year old daughter - non-d. . We decided not to do trial net because it would cause me to constantly worry. I think I would rather NOT know if she is positive for antibodies because there isn't anything I can do to prevent it. Since we are already aware of the signs, I can just look for that. ANyone else want to weigh in? Did the findings made you paranoid? THat is probably part of my personality to worry so much.
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Kelly Mom to Parker (6) d/x 11/09 MM Revel pump with mios; DexG4 (2/2013) Mom to Marley (10) non-d Wife to Dan (43) d/x 1978 MM Revel with quick sets
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#6
11-04-2012, 03:52 PM
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We are in it and I would rather know what is coming rather than not. So far nothing showing for our other DD
 We would like to help advance research any way we could.
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#7
11-04-2012, 04:59 PM
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Because TrialNet cannot tell you anything definitively either way, we decided against it.
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Mom to J., age 9 Dx 2007 @ age 3 Tandem t:slim and Dexcom G4 CGM
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#8
11-04-2012, 05:09 PM
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Couldn't having the antibodies or the at risk genes count as a pre-existing condition and possibly influence a person?s ability to access insurance. even if that person remained perfectly healthy otherwise
Sorry, I don't know anything about how your system works
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young adult w. type 1 dx'd July 2001 Pumping Since Aug 2005 (Cozmo 1700 2005-2008, 1800 since 2008)
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#9
11-04-2012, 05:24 PM
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Quote:
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I don't want to be pitied, just understood. DS age 11  dx'ed 9/09 Pumping with MM as of 5/11DS's ages 9, 5, 3, and a new little one! DH, My awesome hubby and works super hard so I get to stay home with the kids and me, Perfecting the art of "leaving things undone."
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#10
11-04-2012, 05:41 PM
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We did (are) participating in Trialnet. Myself, my 2 sons and my dd's identical twin were all tested. (hubby was over the age limit).
Not surprisingly my 2 sons came back negative and my other dd came back positive. All of my kids were given the option of whether or not to participate. Twice a year I take my other dd for an OGTT and blood draw. It's done at the children's hospital and they make her feel super special. I think she enjoys having all the attention on her alone. I always reinforce that she can choose to not continue at any time. Do I worry more because of the positive antibodies? Twice a year I am more anxious than I normally am. But I have worried since dx day about my other 3, especially with my girls being identical twins. Because of her most recent results, she may have been eligible to participate in a further trial if she qualified. We would have been required to travel to New York(travel & accommodations paid) to take part. This we decided against because she is old enough to possibly take this worry on herself and that is something we don't want. I have always been a big proponent of participating in research if possible for me to do so. Who knows maybe even a tiny bit of info will be helpful in prevention for those with antibodies or a teeny tiny pebble on the road to a cure.
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my extra sweet girls: Amanda age 11 dx'd Nov. 29 2008 (age 7) pumping with a Medtronic Veo & CGM Chloe age 11 dx'd Dec 7 2012 (age 11) MDI Lantus/Apidra My other great (non-d) kids: Colin age 16, Liam age 13
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