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Anyone in Trailnet that had a child then Dx'd? (Or oral insulin study)

Discussion in 'Parents of Children with Type 1' started by mmgirls, Apr 23, 2013.

  1. mmgirls

    mmgirls Approved members

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    My yongest in the trial net study had a 194 2hr glucose.

    Just wondering what happened after a Dx while in the study? I know the 194 is not a DX but that is rather close to a Dx number at 2hrs and has me wondering about the next possible paths we might be on in the future.
     
  2. twintype1s

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    Nate was diagnosed thru TrialNet. It was on his first OGTT, and about 10 months after his twin brother had been diagnosed. This was a few years ago, so the details are getting fuzzy. I do remember the TrialNet nurse telling us that he'd have to be hospitalized. Of course, I balked at that, and our endo agreed with me because it was caught so early, and there was no need to keep us there for training.

    We started testing just a couple times a day, no insulin. In the meantime, I went ahead and got the paperwork going on his pump. About 2 months later his fasting numbers had crept up, and they had him start insulin then. He went straight on the pump. I feel like he progressed pretty quickly without much of a honeymoon, at least compared to some of the other stories I've heard here. Emotionally, it was just as hard, but physically so much easier.
     
  3. mmgirls

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    So who else in the family has T1D ?

    My hubby and I where both tested but did not have auto-antibodies, and I assume they tested other things too.
     
  4. twintype1s

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    My daughter and I were both negative for the antibodies. My husband was too old to qualify for the study. ;)

    My husband has a cousin with T1, but we're not close to him and from what I've heard, he doesn't manage it at all. Lots of other autoimmune on both sides of the family -- RA, thyroid, Crohn's. I'm pretty sure there are extended family members who also have celiac but haven't been tested.
     
  5. mmgirls

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    Well Trialnet just called and said that the "offical lab result" for 2hours is BG 205, the 194 they first told me was a meter reading of the blood.

    SO we are going for another OGTT within 60 days, if she officially goes over 200 on this on this cofirmational OGTT then she will Dx'd.

    I guess I will be requesting/researching info on new-onset trials.
     
  6. mom2Hanna

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    I am so sorry.
     
  7. StacyMM

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    I'm sorry. When our first diagnosis came along, we were surprised. When our second came along, it was a real blow. I struggled more with the second one, probably because I knew what was coming. Life has been re-normalizing again and that seemed unlikely in the beginning. I know that hearing it will hurt, even if you've been waiting for it. I'm sorry.
     
  8. twintype1s

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    I'm so sorry to hear this. :(
     
  9. mmgirls

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    She is not Dx yet, and is not showing any real signs. No increased thirst, no weight loss, no extra bathroom trips at night. She does have a bigger appetite and can be extra cracky but again she is almost 5years old.

    My mind is just racing with what if questions, more of the specific ones of logistics of it all, and entering full day kinder this august.

    If I can realistically go back to work and continue school this fall or take just a few classes becuase although I would hope tha she might have a honeymoon since we are catching onset so quickly, my older one did not have a honeymoon.

    I understand the concept of a honeymoon but not the best way to deal with it if her fasting is still good at 85, and I don't want a pump on her. I almost wish there was a 12hour basal insulin like Lantus. I hear that Levimir can have a shorter duration?

    So many unanswered questions.
     
  10. mmgirls

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    NO DX!!!!

    So she had her OGTT on Monday, fasting was 79 and 2hr was 143.

    She is still in the "impaired glucose" range but her BG did not go over 200 during the test so no DX. And we are back to wondering what will happen at her next OGTT?
     
  11. GaPeach

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    Good news for now. :)
     
  12. mmgirls

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    Yup, the waiting game is not too fun, my hubby almost wishes she would just be Dx'd so we could move on with it all.

    I have been tempted to stick a CGM on her to monitor her BG's, but have not. If she starts to show signs I probably will so I can start to figure out the whole "honeymoon" thing.
     
  13. Mimi

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    Definitely good news!! I'm glad.

    I understand how frustrating the waiting is...is she or isn't she? Constant questions running through your head. We went through 4 years of TrialNet and OGTT with my dd. I had to just put it out of my mind and adopt a "what will be, will be" attitude. It was driving me crazy.

    She was in the impaired glucose range for at least the last 3 OGTT tests before the final one with dx. And even then it was still a shock!!

    So, what I'm trying to say is relax, don't rush a dx (that may never happen). You know the signs, you won't miss them if they start to happen. Worry about it every 6 months but in between let yourself, your family and especially your dd live life!!
     
  14. mmgirls

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    The thing is that 2 months ago at her 6 month OGTT she was over 200 from 60minute to the 2hrs. IF that had been a regular OGTT and not associated with a clinical trial then that would have been a DX, but since it was a trial we went back for a "confirmational" OGTT, yet this time not over 200. She has been with impared glucose since last August.

    I do have to say that with this last OGTT we went in thinking that it would be a DX and really gave it allot of though going into it, we have been talking more with the girls, Grammy and the school about the "what ifs" of her beeing Dx'd. The fact that in most likelyhood there will be no hospitalization nor will she be "sick with onset" and have to recover.
     
  15. missmakaliasmomma

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    I agree with what you're saying about her being over 200 at the 2 hour mark because like you said under regular circumstances, that would be a dx. If it were me, I'd be expecting a diagnosis in the future. But I'm a little bit of a hypochondriac sometimes.

    What's great (if you look at it that way) is that, because you know the symptoms and will catch is so early, AND because her sister has it- if there was a dx, I don't think it would be that much harder to get used to.

    I'm due shortly with my second and I can't tell you how many people ask me what the "chances" are of this baby getting diabetes too. I tell them that my daughter had absolutely no risk of it and she still got it so we will only know if/when he gets it. Personally, I think it will be so much easier to take in ( if he doesn't happen to have it) compared to my daughter's diagnosis- which left me a wreck. I've been telling my husband for weeks now that I'm ready for the dx if it happens to come.

    The way I see it, at least your daughters would have each other for support which is great.
     
  16. Mimi

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    It was just as difficult, if not more to hear the dx of my second daughter. Because I now know all that diabetes entails and what exactly she'll be dealing with.
     
  17. mmgirls

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    for us in some ways it will be easy, because she is used to portion control and weighting and measureing (I weigh her stuff about half the time out of habit)

    But, I have tested her several times and she is very hesitant. I can only imagine how a CGM insertion will go! or an infusion set / POD chnage.

    SHE IS A PICKY EATER, often not finishing something. SHe takes forever to eat! She does not eat in a regular pattern, sometimes just a bit and then a huge portion.

    Her frame and thinness is greater than my other dd at the same age, and I hate to think of a CGM or pump attached to her.

    IF and when she is DX'd we will just have to deal with it and I am thankfull for anytime extra time that we will have prior to it.

    No matter what, I and glad that I have some very specific knowledge of where she stands on the DX spectrum, albe it tilted towards the DX side.
     
  18. Dave

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    In the same boat.

    You are not alone. My oldest son is Type 1 for about 90 days. The youngest is 7. We are waiting on his Trialnet results...in the meantime I gave him a bunch of glucose tabs and tested him an hour later....he scored a 170 both times. My wife and I saw that number... and just... looked at each other...speechless. We can manage everything, the boys are really into eating right and carb counting/low carbs, checking, etc... its the complications lottery that is so scary.
     
  19. Mimi

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    Trying to put this gently, if your 7 year old is not displaying symptoms why would you put yourself & him through the stress of testing him that way? As well as the method you used is not conclusive enough for a dx.

    Trialnet will let you know if your son carries auto-antibodies and what the perceived risk may be. Even if he does have auto-antibodies it is not a guarantee of future dx. Conversely, he may display the auto-antibodies and eventually be dx.

    I understand your world is still spinning from your older son's dx, but I don't think you are helping yourselves by testing your other son the way you are.

    Wait for the Trialnet results and move ahead from there.
     
  20. TheFormerLantusFiend

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    I have a brother who has run slightly high bg numbers for years. In trialnet he was antibody negative. However, in the last month he has had post prandial numbers around 170 with the highest reading on the meter being 195 (I only tested him because it was a new meter- I sort of freaked when I saw that 195 and so since then we've been testing him a lot).
    Although I agree that meters are not especially accurate (I usually take my blood sugar on the meter when I get blood draws and they've been as far off as about 30%), when I recently tested fifteen classmates an hour after lunch in a class for healthcare workers, not one tested higher than 135.

    We have somebody on this forum whose child was diagnosed with diabetes only months after testing antibody negative on trialnet. A negative test does not prove no diabetes.
     

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