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Trialnet Results

Discussion in 'Parents of Children with Type 1' started by Mytribeof5, Jul 26, 2018.

  1. Mytribeof5

    Mytribeof5 New Member

    Joined:
    Jun 7, 2018
    Messages:
    2
    So a quick background, my daughter has had up and down blood sugars for about a year and a half, shes tested through trialnet and they found 1 antibody. She had her glucose test and her fasting was in the 50s (We've seen lows like this recently) and she shot up to over 200 during the test but came down into "Glucose impaired" level by 2 hrs. She also does not have the protective gene they look for. The endo through trialnet said her pancreas is sick and not functioning like a normal pancreas should. I guess im not sure what im writing/asking.. Has anyone been in this position? We go back in about 5 months for a repeat OGTT. Does anyone know what the protective gene is called? The endo said its pretty obvious where this is heading.. :( Would love to hear any stories from anyone that can relate or has been through this with trialnet..
     
  2. kim5798

    kim5798 Approved members

    Joined:
    May 7, 2009
    Messages:
    745
    My friends son was diagnosed(showed markers) thru trial net. Her 2 other children already had type 1. He was later diagnosed with type 1. Advantage was that they already knew what they were dealing with. He very quickly went on insulin pump. My son tested every year since my daughter was diagnosed. Came up positive on the last year he tested(at age 18). At the re-test, it was negative, and no issues since then. We always told my son, it was to help others by doing the test, so they could help figure out type 1.

    I say do not let yourself get too stressed out. you already know what type 1 is. if he gets it, you will already know what you are dealing with. Better than the first time when you had no idea what type 1 was.
     
  3. KHS22

    KHS22 Approved members

    Joined:
    Oct 17, 2013
    Messages:
    353
    Hey ... Wondering how things are going over there? Not exactly the same story, but we had similar. We did trial net, and found one antibody, then 3 the next year. Then q3 month OGTT and A1C's (plus some finger pokes at home...). It was a little over a year from 1 antibody and a few months from 3 that she was diagnosed. They didn't say anything about the gene to us.

    Positives though - it was caught SO early for my daughter, that we were able to just test/monitor for a couple months before even starting insulin. Then were able to start with one injection a day (dinner, she'd spike). Then two when needed etc. SO it made quite a gradual transition, that visually no other kid with T1 gets. Plus, you can be quite certain, that she isn't gong t get super sick/in DKA.
     
  4. Mytribeof5

    Mytribeof5 New Member

    Joined:
    Jun 7, 2018
    Messages:
    2
    Things are going, no OFFICIAL dx, but we know its coming.. Shes been having some spikes into the mid 200's up to 300 lately. And lows into the 40-50s. I spoke with the endo through Trialnet about her fluctuations and she wants us to get into a local endo because she feels she could benefit from long acting insulin... and that even though shes having lows that the long acting will take some pressure off of the "sick beta cells and not make them go into overdrive. Thanks for your reply! I hate the waiting game and feeling hopeless..
     

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