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Question for parents of more than one t1 child

Discussion in 'Parents of Children with Type 1' started by missmakaliasmomma, Oct 18, 2013.

  1. missmakaliasmomma

    missmakaliasmomma Approved members

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    I too would feel confident in recognizing the symptoms, as long as they presented like my daughter's. I'm a little concerned about them presenting a different way like, if he were to develop it when he's older since my daughter was only 17 months. So, I had no idea how she actually felt because she couldn't tell me, I had to go by the physical signs.
     
  2. nanhsot

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    My kids are older, and my son diagnosed much older, of course my experience isn't anything helpful as a comparison, but the signs were clear in retrospect, just lack of personal knowledge made me ignore them, or at least deny them as reality. I mean, what random teenager gets diabetes?? That wouldn't happen a second time. Knowing what I know NOW, clearly he had diabetes, no question. So I feel sure that not only would I know, but my daughter would as well, having seen her brother through it. My daughter is at this moment the exact age my son was at diagnosis, plus a few months. Of course it has occurred to both of us and she has asked to be tested once or twice when she was really tired and thirsty.

    I personally do not want to know if she has the antibodies as I do not want HER to continually stress and worry and dread, and I know she would. If she's going to get it, she will. She eats very healthily, works out, doesn't get sick much, etc.

    From a "where does it come from" perspective there are NO autoimmune diseases in either of our families. None of any significance anyway (mild thyroid issues with females of older years). Before anyone can conclude it's from either parent I think you have to factor in environmental issues and just pure randomness of our immune systems.
     
  3. missmakaliasmomma

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    I felt too at the time of dx, that everything leading up to it was so obvious in retrospect. It all made sense. A kid who's never sick getting sickness after sickness, diaper rashes that would NOT go away, crankiness. Those didn't make me wonder though until after the dx. It was the constant drinking and completely peeing through her diapers all over herself that made me take her to Urgent Care.

    Thyroid disorders are actually of significance though. The thyroid regulates a lot in the body and can affect a lot of things. basically I was told, ifthey're there (meaning autoimmune disorders) in the family, the predisposition is already there. Although no one has ever told me this except my sister, I'm sure everyone in my family got just a little more worried about their kids after the dx of my daughter.

    Because there was no type 1 in my or my husband's family, I really don't think that type 1 itself is genetic.
     
  4. Mimi

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    DD#1 was dx'd at age 7. Because my daughters are identical twins the risk for DD#2 was increased over other siblings. We had all the kids tested through TrialNet and it wasn't surprising when both boys came back negative and DD#2 showed antibodies.

    She had twice yearly OGT testing done and honestly I think she liked being the sole centre of attention. They staff was fantastic with her. Her dx came last year, 4 years after our first one. Her 2 hour bg was 21mmol (sorry don't have the conversion). She was not showing signs before and you can bet I was always on the lookout.

    She didn't have an emerg visit or hospital stay because of the early dx. I would recommend TrialNet as it was a positive experience for us. I did have mild feelings of "waiting for the other shoe to drop" mostly because of the twin thing. But they certainly didn't consume any more of my worry time than anything else I worry about for my kids. DD was never worried about getting d as a result of participating. She occasionally asked about it and we answered truthfully, in an age appropriate way.

    As for which dx was more difficult? They were each difficult in different ways. The initial dx is dealing with shock and the overwhelming amount of learning to do. The second dx, while not shocking for us, was overwhelmingly sad. As another poster already said knowing what is ahead for dd and then watching her realize and come to terms with it was soul crushing.

    Each family will choose to participate or not for their own reasons. This was just our experience.
     
  5. Ali

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    Mimi
    What a very sweet, informative and open response. :cwds:
    Ali
     
  6. Bballmom

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    I have one child that is T1, but my younger child is about 1 month away from the age that his brother was when he was diagnosed and I think about that fact almost daily. When my oldest was diagnosed it came out of the blue. Diabetes was NEVER on our radar, and it was a devastating diagnosis. I still cry sometimes about it 3 years later. That being said, I'm always on the lookout for symptoms with my youngest, but I think it would be even my emotionally harder. We would be way more "prepared" but knowing the future for another of my kids would be crushing.
     
  7. Beach bum

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    A friend who had a double diagnosis in her family said that the most well meaning phrase "well, at least you know how to handle it" was the hardest thing to deal with. Because, she knew how to handle it, because she knew what was in store.
     
  8. missmakaliasmomma

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    I know twins my daughter's age that go to our endo. She was in pump class with one, because the other one didn't have it. Maybe 2 appts after, we found out the other had gotten it too. If I had twins, I think I'd be even more worried because it really does seem like if one gets it, the other usually does too.
     
  9. missmakaliasmomma

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    It's been 4 years and sometimes I still cry too. I think it's normal. Sometimes you just need a good cry :) My daughter's dx was definitely devastating to me because it was a complete shock. I feel like if my son were dx'd, Id of course still be upset, but I know that my daughter can lead the life she wants to with or without D. I've heard so many uplifting stories and a lot of people that have complications don't take care of themselves the way they should. Sometimes I think about her future and it scares me to death that eventually she will be out of my care and have to do this all by herself. I am trying to teach her to make the right choices and be independent so she's ready to take care of herself when she's older.. but that's the part that scares me. I want her to stay with me forever :D lol
     
  10. kirsteng

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    We don't have more than 1 diagnosis, but we did choose to have our older two siblings tested with Trialnet (both negative). I think I just assumed that they would be negative, as the risks are relatively low... and thought that I would feel better seeing it on paper. I know it's not 100% and no one has a crystal ball of what the future might bring, but it made me feel better (and made both of them SO RELIEVED) when they got their negative results.

    Good luck with your decision.
     
  11. Stefanie S.

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    Both of my girls were dx'd last year, within two months of each other.

    My older daughter was dx first, at the age of 11. Looking back she had all of the symptoms but we didn't recognize them. Not even after our friends toddler was dx did we make the connection. A random blood check in the park by my friend and a HI reading is how we found out. We took her to the ER and she received her dx. She was admitted to the PICU (her bg was over 1000 and her A1C was 17) but she didn't have a long hospital stay because we had quite a bit of D knowledge from our friend's son. We had been attempting to learn about his care so we could babysit.

    Our younger daughter, who was 4 at the time, didn't have any of the symptoms. We had checked when we came home and her bg was normal. We checked again a couple of months later on a whim and got a 331. And that was all she wrote. She just had to go have lab work done and didn't get admitted to the hospital, so that was easier.

    Both dx were horrible but what made the second one a little more difficult was my older daughter's reaction to it. She was just devastated by her sister's diagnosis. It was heart breaking to see how upset she was.
     

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