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Question sounds silly, but explain t1 development to me

Discussion in 'Parents of Children with Type 1' started by Debdebdebby13, Feb 21, 2014.

  1. Debdebdebby13

    Debdebdebby13 Approved members

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    Molly was diagnosed in December of 2011. Her endo never checked for auto-antibodies because his view was, she has t1, we already know that much and now we need to treat it, auto-antibodies or not don't matter at this point (please no debate as to whether or not this is the right move, that's not my question.)

    Now we have our little guy, Henry. He is five months and her endo wants him to begin TrialNet somewhere between 18mos and 2 years old. I understand they are looking for auto-antibodies, yes? There are 4 of them max? Here is where I get fuzzy. If he has no antibodies does that mean he will never get t1, and the more antibodies he has the greater chance he'll be diagnosed at some point? Someone please explain how someone progresses through trialnet and how the development of t1 goes etc.

    Thanks!!
     
  2. Christopher

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    I will let the experts respond to your direct questions but I will just say that I am pretty sure no one can tell you that your son will NEVER get T1, just like they couldn't say that anyone will never get it. Since we don't know the exact cause of Type 1, I don't see how they would be able to give you a definitive answer.

    As for TrialNet, you should do what feels right for your family but if I had another child, I personally would not subject my child to that. I would keep an eye out for the symptoms of Type 1 but that is it. Obviously, it is a very personal decision and there is no wrong or right answer.
     
  3. LoveMyHounds

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    This is exactly what our endo said (I also have a son).
     
  4. nebby3

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    I'm pretty sure my cwd was never tested for antibodies either. Unless there is some reason to suspect it is another form of D there is no reason.

    As for Trialnet, antibodies can appear at any time. A negative result does not tell you they won't get it, just that nothing is happening yet. But it could start at any time. That's why they want to screen yearly. You can look at genetic predisposition too. My younger dd had that done for another study, they checked her cord blood at birth and she is predisposed to T1 but the odds are still so low that it tells you little. And even if your non D kid tests positive for antibodies they may still never develop it.
     
  5. sszyszkiewicz

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  6. Brenda

    Brenda Junior Member

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    I am not an expert but here are some tidbits that I have learned. Antibodies that I know of are GAD-65, ICA, IAA, Zn8. I know there is one other, but I cannot remember what it is called.

    Testing positive for antibodies does not guarantee that one will develop diabetes. In the event that someone develops a method of preventing diabetes, I would think those who tested positive would be eligible for said treatment. If someone tests negative (someone not diagnosed with type 1), they should be retested (TrialNet would know the recommended timeframe--every 2 years? 3 years? 5 years?). I do know someone who tested negative about 7-8 years ago, was diagnosed last November. But, I also know Sonia Chritton (look her up on this site) who had two children test positive about 15 years ago. She has given them a "cocktail" of things to prevent the development of the disease and so far, so good. I think her oldest was having some type of "relapse" so she resumed whatever she was using and he is fine again.

    Speaking of testing, if you are attending Friends for Life this year, the plan is to have testing, again, for celiac and its genetic components (there's probably better wording, but I don't know it). Jeff and I both tested negative for celiac, but positive for the gene associated with it. I think this means that something, some day, could trigger it. We hope to have our children tested for this in July. Marissa opted not to have the blood work done because she had just tested negative for celiac. Our other daughter was not at FFL and our son opted out (he had a bad experience with blood work a few years ago--maybe this year!).
     
  7. Sarah Maddie's Mom

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    Same here, and not at all unusual I don't think.
     
  8. Christopher

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    Wow, I didn't realize there were drugs that could prevent someone from getting Type 1 diabetes. That is amazing. Do you have any links to clinical trials (not pre-clinical) that show these drugs prevent diabetes?

    Thanks.
     
    Last edited: Feb 22, 2014
  9. Mish

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    It's really not up to your endo. You decide, regardless of what your endo wants. If it's something that bothers you, then don't do it. If you think it's going to weigh too heavily on your mind, you simply don't have to do it.

    There are many forms of "type 1" which don't have antibodies (or may have antibodies not yet discovered). Just learning that your son has no antibodies doesn't tell you much unless you know your daughter's status. And, unless you REALLY need to know, it's not really necessary to have them checked in her either.

    But in the end, it's YOUR decision.
     
  10. Brenda

    Brenda Junior Member

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  11. Christopher

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    Thanks Brenda. I am not really interested in Sonia but I looked at the link and it seemed very old. I was more interested in getting more information about your statement that this cocktail is able to prevent Type 1 diabetes. Like any clinical trials that prove the claim.
     
  12. hawkeyegirl

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    There are many parents on the board who do Trial Net, and I do not want to imply that they are doing the wrong thing. If Trial Net could definitively tell me whether or not my daughter would develop D, I might consider doing it. But it cannot, and there is absolutely no way I am going to subject my daughter to regular blood draws and the worry that would come with each one that maybe this is the time they are going to tell me, "Yes, she has all the antibodies." (And even then, you don't know whether that will lead to a dx or not.)

    There are parents on the board who live for years watching their child's A1C hover in the high 5s, waiting, waiting, waiting. No thanks. I'd prefer to live my life and deal with it if/when it comes and not a moment before.
     
  13. Sarah Maddie's Mom

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    I'd just echo those who noted that the endo can "want" your son enrolled in Trial-Net till the cows come home but unless you want it too then there's no reason to subject him to it - or you, for that matter.
     
  14. sszyszkiewicz

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    Last month I told my older two "children", both over the age of 18 about TrialNet. I had urged them to participate, but they decided not to. No harm, no foul. I wanted them to enroll/get evaluated for a couple of reasons....

    1) I thought that if they had none of the anti-bodies they could relax
    2) If they did have the anti-bodies they would have access to potential therapies to reduce their risks
    3) I think large ongoing studies are important for future generations so that they might not have to be burdened by this disease, and that very well might benefit THEIR children

    in the end though they were not willing to participate. They are 18 and 22. They call the shots.

    While we are in the neighborhood, my hats off to all of you parents out there that have >1 children with T1D.
     
  15. TheFormerLantusFiend

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    I understand they are looking for auto-antibodies, yes?
    Yes.

    There are 4 of them max?

    No. There are four of them that the trialnet study has looked at from the beginning, but more than a dozen different antibodies that increase type 1 diabetes risk have been found, and if he tests positive on the ones they look at first, they may test for additional ones.

    If he has no antibodies does that mean he will never get t1, and the more antibodies he has the greater chance he'll be diagnosed at some point?

    No. In order to develop type 1 diabetes (as type 1 diabetes is currently defined) he would need to develop antibodies at some point. Of people who EVER develop type 1 diabetes, it is believed (because of past studies) that about half of them are antibody positive by the age of five years old. Because some people become antibody positive later in childhood, trialnet is willing to re-test for antibodies once a year in children; it does not retest adults (if they are antibody negative at the beginning).

    Someone please explain how someone progresses through trialnet and how the development of t1 goes etc?

    Trialnet is a study that aims to figure out how to prevent type 1 diabetes. In order to figure that out, they look for people who are at high risk of developing type 1 diabetes, and so they will do an antibody test on any child at least one year old who has a sibling, parent, grandparent, aunt, uncle, or first cousin with type 1 diabetes; they will also test adults under age 45 if the adult has a child, parent, or sibling with type 1 diabetes (so if you're under 45, you could get tested yourself- there is one parent on this board, BrendaK, who was diagnosed with type 1 diabetes because of her participation in trialnet).
    Anyways, the first test is just for three of the diabetes antibodies. If any of them come back positive, they ask you to come for more testing, to try to find out how high risk you are. For that purpose, they test additional antibodies, they test your A1c, they test certain genes, and they do glucose tolerance tests.

    If you fit certain criteria, they may ask you to participate in a trial that they hope will lower the risk of developing type 1 diabetes; in some of those trials, there may be more evidence than in others that it might work.

    As for how type 1 diabetes develops- part of the point of trialnet is to figure that out. But something or other triggers the production of an antibody (a type of white blood cell that destroys very specific things) against something needed to make insulin- part of the islet cells, or a zinc transporter, or insulin itself- there are a number of possibilities. In some people, this is followed by the body making more different types of antibodies against things that are needed for making insulin. In some people, this antibody production leads to destruction of the beta cells.
    As the beta cells are destroyed, the body's ability to make insulin and regulate blood sugar gets worse and worse (and in children, the body's need for insulin goes up and up) and sooner or later, this becomes diabetes.

    In some people, the progression from being antibody negative to having antibody positive diabetes is less than a year, and occurs with many antibodies (in general the more types of diabetes antibodies a person has, the more rapidly they tend to develop diabetes). In others being antibody positive NEVER leads to diabetes. In the average case, it appears to take about ten years from the first time that blood tests are positive until the person develops diabetes- but the evidence for that ten years is from people who were tested because they have family members with diabetes.
    I think it's worth pointing out that the diabetics that trialnet has studied, who have added a lot to our ideas and understanding of how diabetes develops, are people who have a relative with type 1 diabetes. 75% of type 1 diabetics are like me- we are the only ones in our families with diabetes. It's possible that those of us without diabetic family members develop it more slowly or more quickly, or that antibodies mean more or less in us.

    I was antibody tested when I was diagnosed with diabetes; I was tested for an insulin antibody (which I was negative for), a GAD 65 antibody (associated with adult onset type 1 diabetes especially, and with a number of other autoimmune diseases; GAD 65 coats the islet cells- I had about five times the upper limit of normal of this antibody), and Islet Cell Antibody 512 (my levels for this antibody were more than fifty times the upper limit of normal).
    The positive antibody tests were the reason that my diabetes was decided definitely to be type 1. If I had been a kid without any high blood sugars at all, an antibody test result like mine would have made my odds of developing type 1 diabetes about 70%.
     
  16. glko

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    I am parent to one child dxd in August 2013 through participation in TrialNet and second child who is part of the abatacept study in TrialNet. Yes, they screen for autoantibodies. If negative (like my 3rd child) you can be screened yearly. If you don't want yearly screening no problem. My 2 who are involved both had autoantibodies at first screen ds was 5 and had 3 of 4 autoantibodies (they only screened for 4 then). We enrolled him in the oral insulin/placebo study which he was in for about 40 months before dx. Advantage for us of his participation 1) he did not become symptomatic before dx at all, A1c was 7% at dx. He is enjoying a strong honeymoon and we were able to prepare him a little for the dx beforehand which I think has helped his adjustment to diabetes. After 6 months he takes less than 6units of insulin/day total. 2.) I hate that my child and husband have this disease and my next worst fear is that it would continue in future generations or that others will get it. I know that not all are cut out for research but without the research being done today how will a cure be found? 3) There is some hope of preventing or delaying diabetes in children today through the TrialNet studies. Though it is not proven at least we have hope and we felt it was the best chance we had to prevent or delay with minimal risk and discomfort.
    The decision to participate has to be a family decision. For some the idea of knowing that a child is at risk of diabetes is too much to bear. For us the idea of having a child diagnosed and knowing that we did not do everything in our power to delay or prevent it and to contribute to work toward a cure was too much to bear. Did it make the diagnosis easier for us or our son or us? Maybe, I would say likely yes. Did I have tears and sleepless nights between initial testing and diagnosis date? Absolutely.
    Good luck with your decision, you have lots of time to decide and can always change your mind later.
     
  17. rgcainmd

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    While I very much respect the decisions of everyone who decides not to participate in TrialNet, I'd like to offer a huge Thank You to glko and other families who are participating or have participated in TrialNet. Diabetes research is so vitally important! My husband and I would have liked to participate, but we are both well over 45 (55- and 63-year-old-as-dirt parents of an incredible 11-year-old daughter with T1D.). I am going to encourage my older daughter to participate in TrialNet, if she is eligible (she is currently 24.). Once again, thank you to all you TrialNet participants. And no hard feelings towards those who choose not to participate.
     
  18. kirsteng

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    I feel the same as you, which is why my whole family has also participated in Trialnet. We were all negative last year, which was obviously a gigantic relief. But our older children will be getting another test next month. If we are unlucky and end up with another child with T1D, my hope is that the information gleaned from their progression to the disease will in some small way be illuminating. Knowledge is power.
     
  19. Lightly Salted

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    We feel the same way. The rest of us tested negative last year, but DD will continue annual testing (tomorrow, and as long as she is comfortable, anyway).
     
  20. Debdebdebby13

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    Thank you for all the information and words of advice. We have always planned on having DS participate, for the reasons already listed. We want to help where we can. I'm fairly certain I will feel better knowing it might be coming rather than being hit with it as a big surprise if DS is diagnosed.
     

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