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Trial Net and siblings

Discussion in 'Parents of Children with Type 1' started by mamamccoy87, Feb 17, 2011.

  1. mamamccoy87

    mamamccoy87 Approved members

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    I have seen some people post about having the sibs of their t1 child go through Trial Net testing. I was curious as to how many people have done this, what was involved and the outcomes. Curious - it crosses my mind sometimes with my son:cwds:

    Thanks in advance!
     
  2. mmgirls

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    First, my husband and I were both tested at our first walk. We came back with no auto antibodies, so nothing further for us.

    My second daughter was tested shortly after her 1st Bday, everything normal then. 1st degree siblings under age 18 can be tested yearly for free.

    At her 2yr testing she came back with mildly positive for 1 auto antibody, we had her do a confirming test and then she came back positive for 2 aut anit bodies. We went for a OGTT to access her risk factor and had a normal OGTT but now tested positive for 3 of 4 auto antibodies.This was now about 2.5yrs old.

    We will go back every 6 months for free testing and OGTT. After she turns 3 she will be elidgible for a prevenative study using an oral insulin.

    Depending on what auto antibodies you have and gene testing if you choose to include that and the results of the OGTT, prevenative and early onset trials can be explored.

    it is totally a personal decision, but I want as much info as possible.

    My 2.5yr olds risk is above 25 but below 50% at this time. We are watchful but do not do home tests very often now that we are continuing the trial net and know that she will have a OGTT every 6 months from now on.
     
  3. TheFormerLantusFiend

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    Two of my four brothers were tested with trialnet, and both came back antibody negative. Despite being under 18 at the time, neither has been retested. One of them had and continues to sometimes have some odd numbers on our home meters; none of the four have diabetes.
     
  4. Jordansmom

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    Three years ago, my 4 non-d kids and I were tested and we were negative. My husband was positive initially for 2 antibodies. He's tested every 6 months now and is given an OGGT. He has impaired glucose control. He has tested positive for 0-3 antibodies at various times. Three years ago they said he had a 50% of developing type 1 within 5 years.

    His father developed adult onset type 1 at the age my husband is now.

    I continue to have my youngest tested yearly with trialnet and he always comes back neg.
     
  5. Trev

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    Trial Net

    All the kids, well none d ones were tested. Our oldest child 10 at the test time had the auto-antibodies, and she developed diabetes at 11. I was glad to know so I could keep an eye on her.
     
  6. obtainedmist

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    Oldest tested (at 22) and was negative for antibodies. They told us he wasn't eligible to continue testing.
     
  7. Mik's Mom

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    I was tested as was my son - I don't have to be tested again and my son gets tested every year. He hates needles, but does this so that maybe someday.... research will pevent any other children like his little sister from getting diabetes.
     
  8. pam_r

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    I am in the same boat as you. I was told that if my other son has the antibodies that he still may never get diabetes. This statement made me cancel the appointment that we had set up. I just don't want to think about the what if's or when... if it may never even happen...

    I do still ponder the idea about getting him tested though.
     
  9. obtainedmist

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    The positive side of being tested is that if he does have antibodies, he may qualify for preventative trials that can delay the onset. That would be worth it for me.
     
  10. pam_r

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    Were you ever given statistcs on how much of a delay?
     
  11. jules12

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    I chose not to include my oldest. She is the type that worries too much about everything.
     
  12. tom_ethansdad

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    All of E's siblings have done it, two years now. What is involved is you contact them to get your children set up. They will send you kits in the mail with Fed EX envelopes. You fill out the paperwork and take everything to a local lab that does the blood draw, packages everything up and sends it back to Florida. All of ours have always come back negative so communication is a letter in the mail about six weeks later stating as such. I have heard of some who were positive for some antibodies that received a phone call since that is faster than mail.

    I figure it's easy to do, and could allow for early detection and if found access to some attempts to try and delay onset.

    Nothing is guaranteed so you have to accept that. No antibodies doesn't mean they won't ever get T1, and presence of antibodies doesn't automatically mean they will. If you can tolerate that, then in my mind the additional information is helpful.
     
  13. Kimby

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    We allowed our children to choose whether to participate. Kaitlyn signed up first. She tested positive. She then did the genetic testing for the protective gene, and was negative, and took an oral glucose tolerance test. Even though the first OGTT was completely normal, she was placed in the highest risk category (>50% of developing T1 in the next 5 years). That was in 2008. Six months later, her OGTT was impaired. Then it was normal again. Last summer, it was horrible with numbers over 200 at an hour & 90 minutes & just squeaking by at 194 at 2 hours. I was sure she was at the doorstep of a diagnosis. Six months later in December, even with the extra holiday treats, her test came back with wonderful numbers and nothing over 200. Her A1c is 4.9. Knowing has made me sad & grateful for what we have right now too. She's twelve. I read about puberty & I'm so thankful that she's doing okay for now. I wish our D kids didn't have to worry about so much....

    One by one the other boys have participated, & they are all negative. We get them rescreened annually. Ben has only been tested once though. I don't know when I will get him rescreened. We usually have it done at Vanderbilt when we go. It's a two hour drive, so we make a fun day of it, eat out, etc. My older boys WANT to go. It's harder to get excited about taking a two year old on a trip. I could get the kit, but Vanderbilt is so good about numbing the kids, distracting them, and treating them like heroes. I don't think a lab would be quite the same for a little one.
     
  14. SarahKelly

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    Wow! That is nice. This is why we haven't had it done even our wonderful endo office stinks at the basics for labs - they tried to papoose Isaac at dx and that turned out terribly. So, I can't imagine having my five year old whom is very much a worrier sit still and want to find out if he might have diabetes especially since he already asks to be checked regularly at home. We also decided that for us it wasn't helpful since there wasn't preventative treatment offered for his age. Until he's 7 there's not a lot they offer, but each year we offer and let him decide. Yes, he's only 5 but he is definitely aware of the depths of treatment for diabetes with all he's seen in our family.
     
  15. mmgirls

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    There is an oral insulin prevenative study hat starts at 3, but you have to has a specific auto antibody and one other additional auto antibody.

    My dd wil qualify when she hits three if everything else stays the same as now.
     
  16. lakevictoria

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    We participated and we all came back negative. I'll have my daughter tested annually. For those of you whose initial antibody tests were negative, and then became positive, do you have ANY idea as to what precipitated these antibodies to form?????
     
  17. Kimby

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    That's the purpose of Trialnet. Trying to figure that out. They do know that 50% of people who will develop T1 at any age have antibodies at age 5. Once grown, if you don't have them you probably never will. That's why they test kids annually for antibodies, but after age 18, they won't retest a negative adult.
     
  18. TwoWithType1

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    After my daughter was diagnosed we had our oldest son tested through Trial Net. His blood work showed no antibodies, but about 4 months later he was diagnosed with type 1. We were shocked. The negative Trial Net results gave us a false sense of security.
     
  19. Jordansmom

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    I absolutely think this can be true. And giving you a sense of security against another dx shouldn't be the reason anyone does trialnet. I said something to our CDE about recently getting my son's negative results, and she kind of flippantly replied "I guess you don't have to worry about it for the next 6 months." She explained typically it would take at least 6 months or so for a child to develop symptoms of D after a negative result.

    Even so, many children are diagnosed with Type 1 and have no detectable antibodies. Whether that means they have a different type of diabetes or just have antibodies that have not been identified yet, is anybody's guess.

    Sorry about another dx.:( That must have been devastating.
     
  20. PatriciaMidwest

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    Isn't that something? I can see why you were so worried, and now all seems to be well with your daughter.

    There is so much about T1 we really just don't know yet.

    I'm curious for those who have had siblings tested, did they share the %'s with your child (50% chance over 5 years). I am considering trial net but I don't want to create extra anxiety for my kiddos.


     

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