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TrialNet 5/5 positive antibodies :(

Discussion in 'Parents of Children with Type 1' started by cococay, Mar 25, 2014.

  1. cococay

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    I've been a member off CWD for many years - read tons on here, but haven't posted much.

    Our oldest child is 15 and was Dx'd with T1 when he was 5 1/2, so we've been living with this for many years now.

    We've had our middle daughter screened a few times, including at FFL when we got to go in 2009. Hers have all come back neg.

    We had both her and our 4yo son (who I was pg with at FFL in 2009) screened in Jan. Last week, we 'the call' that our 4yo tested positive for the initial 3 antibodies and then today we found that he is positive for the other 2 as well including the ZnT8a.

    We haven't gone yet for the next steps, so we've not been given a formal assessment of his risk yet, but I don't have to be given the formal number to know that it's extremely high.

    I have read through the forums, and I know we're not alone, though I haven't noticed many if any that have all 5 positive.
     
  2. skyblufig

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    I'm sorry - that sucks. Consider, though, he might not develop it. The study* I found said something like 70% of kids with multiple islet cell antibodies develop D; that means 3 out of 10 don't. It ain't over til it's over! [[hugs]] Sending you positive thoughts -

    *http://www.ncbi.nlm.nih.gov/pubmed/23780460
     
    Last edited: Mar 25, 2014
  3. KHS22

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    Sorry to hear about this!

    But Jen is right, its a 'risk' but not an absolute.

    And there are silver linings even if he does end up getting diabetes
    1. You will be watching for symptoms.
    2. He will have regular OGTT or A1C's (they did A1C's with my daughter, as she was 1 when she was first foundt o be high risk and they didn't think she could do OGTT
    3. He will hopefully be diagnosed early, before DKA, getting very sick etc.
    4. you are contributing to research into the development of type 1~

    Not that any of this really makes you any less sad, or stressed, I know.

    Hugs, thinking of you!
     
  4. Dave

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    Sorry - this is a scary situation. I have one son who is also at risk...we just performed trialnet again. We are all on a very low carb diet - stressing the islets as little as possible is probably a wise thing to do.
     
  5. joshualevy

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    I'm sorry to hear the news. I don't think there is any good data on all 5 antibodies, because until recently, they only tested for 4 of them. So we haven't had time to see what happens with the 5th one. However, I wrote a blog posting on the progression of 4 antibodies, which you can read here:

    http://cureresearch4type1diabetes.blogspot.com/2013/10/time-to-diabetes-by-number-of-antibodies.html

    For people who tested positive for 4 antibodies, the half/half point was about 2 years. Meaning that two years after testing positive for 4 antibodies, about half the people had been diagnosed with type-1 diabetes and the other half had not. After 7 years about 85% of the people had been diagnosed.

    I know this is not what you wanted to hear. And I"m sorry for that. But it is the most accurate data I know about.

    Joshua
     
  6. cococay

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    Thank you everyone for your kind words. We don't have a plan at this point other than the phase 2/3 monitoring. I don't know if we'll change his diet now, that's a lot for a 4 year old, but we may make some adjustment if it makes sense to do so... I think the only point I would consider any serious diet change would be, temporarily, when he's getting higher readings, but not enough to be able to start insulin too. Especially, if he isn't feeling well because of it. I hope that when we do reach that point, we will be able to add insulin.

    I don't think he has it yet, I tested him some a few days ago and they were very good: all but 1 in 80-90's, and the 1 was not a full 2 hrs after lunch, he'd had an Apple, I forgot to wash his fingers, and, with all those Astrix, it was still only 132.

    He's had no significant symptoms, other than always hungry - he's a 4yo boy, if it weren't for these tests, I woukdnot even think about that as a concern... Very energetic, no excessive thirst or urination.

    Thank you Joshua, I had run across your blog a couple of times, it's one of the easier to understand data available. (Though I do pretty well at deciphering the scientific-speak in the studies to. When I first found your blog post, we only knew of the first 3, and even those risk numbers are pretty significant.. I've noticed that nothing really speaks about 5. I guess my son's data will likely add to the research, im guessing he's one of very few that they have caught so far...

    It was definitely not what we wanted to hear, but it's the reality of where we are. I realize that while positive antibodies are not a dx, that the much autoimmune activity its not likely benign either. I am coming to terms with the reality that we face, and we'll be ok, he'll be ok. I'm curious to find out what kind of number they are going to end up giving us for his risk level, I know it's gotta be quite high.
     
    Last edited: Mar 27, 2014
  7. StacyMM

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    I'm hoping that he is one of those 15% that are still clear 7 years later! :)

    We did trialnet for our son and there weren't 5 antibodies at that point. I think that you might be finding little in your searches because of the newness of the fifth. We had the opposite problem - zero antibodies but developed T1.
     
  8. mmgirls

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    Well, when my dd started Trial Net I do not think that they were testing for the 5th that they do now. I can't even remember how quickly it happened but we went from no antibodies to 1 to multiple to all four within a year? We rather quickly decided to participate in the oral insulin study for the prevention of T1D, our thinking was that I wanted if not fully prevent T1D , maybe postpone it happening when she was still so young, having been there and done that with my oldest that was DX at 13months.

    We are now almost 3years in and she was just Diagnosed on the 17th (she is almost 6ys old). Her fasting was 94 and her 2hr was 224, we had an A1C done in recently and it was 5.7 an average of 117. We are seeing very mild symptom's, nothing glaring or "classical". She is not sick there was no hospital stay, there isn't really any treatment/ medical plan yet because we are catching this so amazingly early.

    I think all that you have done so far is had blood drawn and tested, correct? well there many ways to continue with Trial Net, stay with what you are doing just the blood draws. Move onto OGTT's and they will do the blood draws along with it. or move onto a clinical study if there is one available. or walk away.

    As I said earlier we chose to enter a clinical trial for the prevention of Type 1, but the rub is that it is a double blinded study and we not only do not know if she is getting the placebo or the actual drug but also we do not get the information regarding her antibody levels. But we thought it would be a trade off for the possibility to prevent or postpone the onset. We also thought that either way it was adding to the data that they have. in our case we are adding to the data of following a child with no autoantibodies at initial testing to a child diagnosed with T1D within 3 years.

    So you need to decide what is best for your family, talk to the Trial Net people about all the options in how your family can actively participate, what it was that brought you to having the initial testing done in the first place?

    My family actually have grown to like the visits, they are mini vacations supplemented by reimbursement to the Trial net location at Stanford
     
  9. mmgirls

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    With our 4 auto antibodie results they were pretty vague 3years ago and it was 25-50 change of developing T1D within 5years.
     
  10. cococay

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    Thank you,

    I have been following your story, but didn't want to hijack your post. I really am sorry that your daughter has formally crossed the threshold.

    I really appreciate your commenting. I didn't realize that yet about the oral insulin. On one hand, he's already positive for all of them, so what mire could they really tell us, but it's really like to know what changes are our aren't happening.... that will add some for us to consider for sure.

    We went into the testing for multiple reasons. I did want to know if my kids were potentially developing t1. I did find my daughter's negative letters comforting, and I felt free to free to let and extra drink of water or trip to the bathroom be explained as a kid being kid. I love science and do see the value in collecting data, and the drug trials. Our oldest son is our only immediate t1, but, also 2 of my husband's brothers (our children's uncles) also had and passed away because of t1, so we do recognize enough family history for concern too.

    I am a little annoyed about the financial of these trips. We are about 200 miles from the center, and I don't think they normally compensate for gas / lodging as I've heard. I am trying to find out more about that. Right now, we can do it, and we will, but honestly our kids qualify for Medicaid, we may not be able to handle the cost of gas if they don't, though I think I may have another resource for help of we really need it.

    Thanks again, it's comforting to hear from other that have walked through this, just so sad for any of us to have to.
     
  11. joshualevy

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    You should ask if you need to go to the center at all. In some cases, you can go to a local lab, and the lab sends the blood sample to the center. They pay for lab and for postage. There are labs in much smaller places than there are centers, and far more of them. You should call up the center, and ask about labs near you. Might help.

    Joshua
     
  12. mmgirls

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    Once we started to do more than the simple blood draw they started to cover our gas an a night stay in a hotel. So for us like I said we make it a mini vacation, going and doing something else before or after. I find after better. Or if we wanted they would cover the flight of a parent and the child, hotel and rental. I think we did that once because of weather, but again we covered dad and sister to flly for our mini vacation.

    I have no regrets, my family and the school will hopefully be able to ease into this new role with minimum interruption. I hope that with the use of the CGM we will be able to make good choices regarding how to and when to implement the use of insulin.

    Yes we will most likely make some family dietary changes that we can all benefit from, but nothing outrageous just because of the diagnosis.
     
  13. cococay

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    Yes, we are going for more than simple blood draws. We are, at least, going to attempt an oral glucose tolerance test. My son told me the other day that he's not scared anymore, then he says, just a teeny bit... he panicked the day we told him that he'd need another blood test, so there is progress.... but, yes we are going with the plan to do an ogtt. With the things I've heard about labs performing them, and especially the mistakes in dosing and timing blood draws and such, there is no way that they would contract that out...

    Our coordinator was going to look into lodging, I also send an email to the trialnet coordinating center asking if this is something we should expect. We have a lot of friends (not with space for 5 though) including our pastor /mentor that we served under (we are going into full time ministry) that all live there, and so we dont mind going there, but generally haven't because of costs.

    About diet. I have a friend who caught their older daughter's D very early, and she did find that limiting simple carbs and keeping her lower carb during those transitional months, between the pre-d dx and her needing insulin, did stabilize her jumps (she was getting a lot of drops too) and most importantly, her daughter felt better because she wasn't bouncing as much. So, yeah, I can see a time and place for careful carb reduction, but I'm not going to 'put' my child(ren) on a low carb diet to artificially reduce external insulin need.

    Thanks again
     
  14. mmgirls

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    Have they told you his current A1C? have you asked?
     
  15. glko

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    We live 120 miles from our nearest TrialNet center and they do provide a hotel room, mileage and meals for one adult and the "patient" as well as $50 per OGTT which we give to our kids who are in TrialNet. Through participation in TrialNet over the past 3 years my 12 yr old daughter has over $1000 in her savings acct (she has been in the Abatacept intervention trial since last summer). She has 2/4 antibodies and has had some abnormal OGTTs for a couple of years now but has not met diagnosis criteria. Our ds was in TrialNet oral insulin study for about 4 years before being diagnosed last August. After 7 months he is still taking about 4-5 units/day total and he is 80lbs. So a very strong and long honeymoon. The beauty of the study is that he was diagnosed early and was not symptomatic at all. Plus we continue to hope that by his participation that Type 1 diabetes will not strike another generation of children (he is the second generation of my husbands family to have Type 1).
    Each family has to make their own choice, but hopefully the financial will not be a limitation for you. Either way, you will know earlier and hopefully your second child will be more prepared for the diagnosis IF it comes.
     
  16. cococay

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    No, we do not have an a1c as of now. I am quite sure it's not been run as of now. So far the antibody tests are the only ones that have been run.

    They will do one in 2 weeks, they'll run an a1c, rerun the antibodies, hla typing, of course glucose and I assume c peptide during the ogtt itself.

    I do have a copy of his labs, there is a place for ogtt entries, so I'm sure if it had been run it would be there too.
     
    Last edited: Mar 29, 2014

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