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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. kim5798

    kim5798 Approved members

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    My daughter is 15, dx type 1 at age 3. My son, has been participating in trial net since age 5, when my daughter was diagnosed. He just turned 18 in December. He has been antibody negative until his last screening; had a false positive for one antibody; the retest was negative. We as parents participated the first time thru, and since we came up negative, we did not need to rescreen in subsequent years. As far as "living in fear" idk that participating or not participating in a study will eliminate or create the fear...the fear is there as one of our children has this disease. I have always explained it to my son as that we will hopefully be able to discover what causes type 1, and perhaps prevent it in his children or his sister's children or perhaps his grandchildren. As far as whether he will develop it, I figure if he does, we are being proactive as we can be in testing...his pediatrician runs an a1c each year at his physical too, and we watch. I am hopeful that they will find a cure for type one someday, however, I think it is more likely they will discover how to prevent new cases rather than cure those that have had it for years. We still participate in the "walk for the cure" each year.

    Just because YOU may not get an immediate benefit from a study does not eliminate its value overall. A few blood tests over the lifetime is not going to cause so much drama in one's life. If it helps one child be prevented from getting type one in the future, it was worth it. And if no one is prevented from getting it...it still gave the scientists something to study. If no one participates how will we learn???



    I think participating in the trial net study has value. If you choose not to participate, that is your option.
     
  2. librarylady

    librarylady Approved members

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    My family has also participated in TrialNet for the last four years. My daughter was diagnosed seven years ago at the age seven and all of her brothers are older than her. They have all tested negative each year and since two of them have reached adulthood they now longer participate. I am the only one that has tested positive so I go in every six months and nothing has ever changed; I still test positive for GAD65 each time. I don't worry that I will actually develop type 1 but I do get a sense of accomplishment each time that I am at least helping in a very small way to give scientists more data to study. I agree with the poster above that I think this is more likely to help prevent diabetes in later generations rather than find a cure for those who already have it. But if my daughter never has to worry about her kids or grand kids developing the disease it is definitely worth it. One can only hope.
     
  3. nanhsot

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    Strangely my insurance company asked for the autoantibody results when he started pumping, to "prove" he had T1. Like we'd fake it!

    As to trialnet, I'm also in the "I know the signs, watch closely" camp. If I knew my other child had markers I'd be so anxious waiting for the other shoe to drop, it would be a source of near constant worry for me personally. I don't want to have that dark cloud personally, but it's a very personal decision each family should make.
     
  4. Sarah Maddie's Mom

    Sarah Maddie's Mom Approved members

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    I likely wouldn't base a decision to enroll a baby/toddler in Trial Net based on the "greater good" argument. I would decide based on my own desire to have any information that might be gained, my willingness to add another layer of diabetes engagement to my family's psyche and the degree to which I thought my baby/toddler might be affected by the blood draw.
     
  5. MEVsmom

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    The way I feel about it is if no one participates in Trial Net or trials, research will never go anywhere. My older daughter was in a clinical trial for her rare disease where she had a 7 hour brain surgery. I knew going in that it wouldn't make her better. It might have a little benefit to her if any. However, the type of treatment they were trialing had effects in all kinds of other diseases, not only he rare disease. Her condition is terminal and that is her legacy. I feel good about that. Probably less than 12 kids in the world have had that surgery. That is a huge impact. She might help someone down the road by being studied. She is my non-D daughter and she will also participate in trial net (if I can ever get the local contacts on the phone:) ). To me, it's the right thing to do. So, what's a little blood draw?

    I can't say I want to someday see a cure or prevention for some genetic disorder or potentially genetic disorder when I am not willing to have my children participate in trials.
     
  6. Christopher

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    TrialNet is not the only research going on for Type 1 diabetes. And participating in a clinical trial is not the only way you can support that research.

    It is not the fact that it is just a "little blood draw". You also have to take into account the emotional and psychological effect (depending on the age of the child).

    I would be very comfortable saying I want to see a cure but not have my non-D child participate in TrialNet. I guess the thing for me is that when you break it down, what are you really gaining? If you test your non D child and they don’t have the antibodies, do you breathe a sigh of relief that they will never get diabetes? No. As we all know, anyone can get it, at any age. Alternatively, if they DO have the antibodies, then do you always have that “black cloud” in the back of your mind wondering when they will get it? Probably. It is only natural. So what do you do about it? You watch for the signs and symptoms and try and catch it as early as possible. I think if you have one child with Type 1 and one who doesn’t have it, you will always keep an eye out for the symptoms in the one child, regardless of if they have the antibodies or not. So that is why I would choose not to get involved with TrialNet. For me, the potential negative effects would outweigh any positive effects.
     
    Last edited: Feb 24, 2014
  7. Snowflake

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    Our DD was diagnosed just after her 2 birthday. According to other threads I've read on CWD, her young age at diagnosis potentially elevates her little brother's risk somewhat above that of the typical T1 sibling. DS did TrialNet just after his 1st birthday and will do it again this year. We already live with quite a bit of anxiety about every tiny indication that he might develop T1 (e.g., excessive urination during potty training, which was the big blinking light that led to DD's diagnosis), and we work VERY hard to insulate both children from that anxiety. I do cling to the small comfort that 11 months ago he was antibody negative. I absolutely know: 1. that his antibody status might change over the years; and 2. even if it does change, that is not 100% predictive of his developing T1; and 3. regardless, I still need to watch for symptoms of his developing T1.

    The blood draw was so not a big deal. He cries more over getting immunization shots. Moreover, he will also have to be screened every two to three years for celiac, which unlike TrialNet is medically indicated. He's a toddler, and I can't say what his personality will be like in 5 or 6 years, but at the moment it's hard for me to imagine that any of this will bother him; but if he ever objects, we will stop participating in Trial Net. This all seems worth it as a tiny contribution to research and also for the possibility that, if he were to develop antibodies, he might have access to clinical trials for early stage treatments.
     
  8. Christopher

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    Great. It sounds like it makes sense for you, your family and your situation.
     
  9. mmgirls

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    my youngest that is now almost 6 has been doing Trial Net since 2yrs. At her initial testing at 2yrs she was antibody free. A year later 1 antibody showed up so we did a confirmatory test and confirmed the original antibody and two additional antibodies showed up, so another confirmatory to confirm now all three.

    It was at that point that Trial Net offered that she could enroll in a clinical trial for the prevention of Type 1, an Oral insulin study. We would move on from the simple blood draw to check and keep track of antibody level, A1C, and fasting BG with everything be transparent to a Double blinded clinical trial.

    That is the hardest part for me not getting all the information from the trial testing, I love that we are adding to the data sets that will hopefully allow some smart person somewhere figuring this out, what are the events that lead to our kids bodies making such a big mistake?

    Being in THIS clinical trial is not a simple blood draw, it is a full on 2hr oral glucose tolerance test. My non-D daughter has had more blood work done than the rest of my family combined over the last 4 years. Its been 6 months since our last study visit and we are planning on going again in several weeks. I am at a crossroads right now, because I do believe that my daughter is developing Type 1, obviously our participation in the clinical trail did not prevent it from happening. SO if she is developing Type 1 do I stay with the clinical trial for the sake of more data for them but not necessarily me? I do get some info in regards to BGs but not antibody levels. Or do we stop the clinical trial and OGTT's and see if we can go back to just the regular screenings where all the information they gather is transparent to me?

    While my daughter does not like getting the IV put in nor the tape being removed afterwards, she loves out trips for her blood work. We travel to Stanford and make it mini vacations for our family, usually going to a theme park or aquarium after her testing. Being involved in that testing allows for natural conversations about the possibilities that she might develop type 1, we are not living in the dark nor are we living under a black cloud. (my perspective on my family, I am not saying that those that choose not to participate are living in the dark or have their head in the sand, it is personal choice with not one way being any better than the other, its all what your family is comfortable with)

    Yes I get upset about the idea/realization that she might be developing Type 1, but it is not a black cloud over our head. No matter whether we do Trial Net or not, we would still wonder and think about the possibility and have a certain level of unease. But if she is DX'd, we have had many conversations already and hope that it will make for an easier transition. With our participation I hope to catch the DX super early and that she will have a good strong honeymoon that will also allow us to take it slower and learn what a Honeymoon is.

    If my daughter said that she did not want to do this anymore we would stop. But our participation in Trial Net is/was something tangible, our family actively participated in research that we hope will lead to information that will benefit our children and future generations.
     
    Last edited: Feb 24, 2014
  10. Christopher

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    Thanks for sharing that. I really do feel for parents who have one child with Type 1 and others that don't have it. A lot of tough decisions and worries.
     
    Last edited: Feb 25, 2014
  11. tiger7lady

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    I just wanted to throw in our experience with TrialNet. After Vince was diagnosed we all did the blood draw to test for auto antibodies. Everyone came back negative and my daughter was put on the yearly rotation. After 1 year she came back negative again. 2nd year - negative. 3rd year she came back positive for 1 auto antibody. They did a second blood draw to confirm about 8 weeks later and she came back positive for 2. At that point they had her do another blood draw, a Oral Glucose Tolerance Test, and an A1C. Based on these tests she was placed in the higher risk category and is on a 6 month rotation where she goes in and has this done every time. At every stage of the game we consulted her and her feelings on the test. She understands that the data that is collected is being used to further diabetes research. She is in no way scared of getting diabetes and she knows that she may never get it. Her feelings on the blood draw has always been as long as she can have EMLA it's totally fine. The only thing about the experience she really doesn't like is the syrup she has to drink for the OGTT. But the $50 stipend she receives every 6 months, the hours of movies while everyone dotes on her, and missing a school day make up for it big time. I tell her every 6 months she doesn't have to do it if she doesn't want to and she always chooses to go.

    Personally I do not live in fear either. It gives me peace of mind knowing that if she does develop diabetes we are going to catch it very early on. I would live in fear if we didn't have testing, worried that I was missing the signs or thinking that every little thing was pointing to diabetes when it's not.

    You have to do what makes sense for your family and especially your child.
     

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