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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

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    First I don't want anyone to get the wrong idea here, I'm not sitting here anxiously awaiting the day my son develops diabetes, trust me, I've just been told to watch for the symptoms (which duh, of course I will) Anyway, since I don't think anyone really knows the true probability of a sibling getting diabetes when another has it, it's kind of a "I won't know til he gets it" kind of thing. Obviously, everyone I've come into contact with asks me "what are the chances he'll get it too?" Well I have no idea since my daughter was not "at risk" for it either (no family history so it's not one of those things we thought we'd have to worry about)

    I'm debating on whether or not to start trial net with him. Does anyone know what age they start testing them at?

    Was the first or second dx harder? I definitely feel like if my son were to wind up having D, I'd be a alot calmer and relaxed about it since I've already been dealing with it for 4 years. I was so uptight when my daughter was first diagnosed but I feel we've settled into a good routine and since I've already made the mistakes with her, I won't make them again lol (poor firstborn children, always making the mistakes on them)

    The reason I thought to ask this today is because we saw a new ped for my son who obviously wanted to know about family history so of course when i mentioned my daughter with D, he told me to watch for symptoms and test his BG if I think anything is up. I would do that anyway if I truly felt I needed to, he just kind of brought the issue to light.
     
  2. obtainedmist

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    Hope you don't mind if I chime in...I don't have 2 dx'd, but I thought I'd give you the link to Trialnet. I'm sure you'll get answers to lots of questions on this site. As soon as our dd was dx'd at 17, we had our son tested as well. It turned out he didn't have any antibodies, but I felt that I would want to know if he did and have him participate in a study that might offer more intervention at an earlier time (in addition to providing more information to researchers).
     
  3. obtainedmist

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  4. obtainedmist

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  5. StacyMM

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    Second diagnosis was much, much harder. We never 'watched for signs' or checked with colds or tracked how much he drank or anything and he participated in TrialNet (no antibodies) but when he developed it, it was pretty definite. Same thing had happened with DD - she had symptoms, I called the doc and asked to have her tested for diabetes - so this time I just did a finger poke to make sure (he was just under 600, I think) and we knew what to do so we headed to Children's.

    FWIW, I do believe the odds are low. Something like 3% or 5% or something. And managing the new diagnosis was definitely easier - just emotionally harder. We only have two so I don't have a third to worry about, but if we had another baby, I would still expect them to be diabetes-free. Even with two, I see the odds as really unlikely for a third and wouldn't worry about it. It would be crazy odds, you know?
     
  6. MomofSweetOne

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    He will the benefit of all the research studies posted here. You can make sure he has adequate Vitamin D, good gut health, etc. to give him the best chance of not getting it possible. ;)
     
  7. missmakaliasmomma

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    My daughter has always been the picture of health, even with D now. She only had one fever before being diagnosed, she got coxsackie, then voila! Diabetes. She gets sick about once a year with a bad cough and fever. Same thing every year. She's never had a stomach bug (knock on wood, thank God)

    Coxsackie is something we really couldn't prevent because it's a normal childhood illness -along with what they say is a "predisposition" to diabetes, which we didn't know she had. Come to find out the link between other autoimmune diseases and D, but anyway... Before diagnosis, she drank milk, took her vitamins, ate fine, etc. I just don't think it's something you can prevent, maybe postpone but I truly don't believe it's preventative. That's just my opinion.

    He's not going to do things or eat things much different than my daughter. I don't believe one kid can has to watch their sugar while the other eats bags of lollipops. He will be on the same healthy diet she's on with limited sweets, take his vitamins, etc. It's better for anyone to eat like that anyway.

    I'm not looking for ways to "prevent" it since I don't believe that's possible, just looking for insight on; if it were to happen, how do you handle it.
     
  8. missmakaliasmomma

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    Does type 1 run in your family at all? Why do you think the second one was harder?
     
  9. StacyMM

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    It does not. We have no autoimmune disorders of any kind in either of families as far back as we can find out. My daughter likes to say that she started a new trend. :p

    For me (and this is just me and could be completely the opposite for everyone else) the second was harder because we knew what was coming. And we knew it was a tween who also knew what was coming. When my daughter was diagnosed, we knew nothing about diabetes beyond the fact that she would need shots every day. We didn't know that we would probably never be well-rested, that diabetes was hard to manage, that every food would need calculated, that we would sometimes feel like mean food police, that our child would have horrible days because lows and highs can be miserable to experience, etc. We went into it blind and it turns out I preferred that because with DS we knew ALL of that. And we knew that he dreaded getting diabetes and would have a much harder time adjusting. And we knew that he was in puberty, and as an older sibling than our T1, we would have 6+ years of experience and still not have a clue about how to handle puberty and diabetes. Or a honeymoon, since DD didn't have one. And we knew that middle school didn't have a nurse. Lots of things. Mostly it was knowledge that did it. Don't get me wrong - management was so much easier because we know the disease...we just knew too much to be as unafraid as we were the first time.
     
  10. missmakaliasmomma

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    An ignorance is bliss kinda thing? we're not anywhere near puberty yet, I don't even want to THINK about that yet. I'm sure we will all be miserable lol
     
  11. mmgirls

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    i do not have two with T1, But my second dd has participated in Trial Net since she was 2years old and has a high risk for becomeing T1 because she has all 4 of the auto-antibodies associated with T1 and has had impaired glucose readings during her study OGTT tests. She actually had a BG of 205 during a OGTT earlier this year and we really thought that when we went back for the confirmational OGTT a month later that she would be Dx'd.

    I have my second dd in Trial Net because I want to know as soon as possible because I want her to never get sick and have a long honeymoon. I also want her to be able to participate in new onset sudies if she is ever Dx'd.

    We just got back from Stanford for a study visit and she had a fasting BG of 90 and 1 and 2hour readings below 140 and all is well and we don't have to go back for 6 more months.

    I feel good that we are participating and hopefully some smart person out there will take this data and fixure out how to stop Diabetes in its tracks.
     
  12. TripleThreat

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    I'm probably the worst case senerio here to answer this question. All were in trial net and 2 had no antibodies 1 did all have type 1 now, I'm the carrier
     
  13. StacyMM

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    I'm very curious about this :) How did you find out that you were the carrier? My kids are opposite on the antibodies, too, by the way, and that has always struck me as weird. I talked to the doc about it in the hopes that one would have MODY, or Type Something-Other-Than-1 or something...just grasping at straws but I figured if I didn't ask, I would never know.

    Anyhow, we (DH and I) have thought that maybe it was a matter of each of us having half of something that combines to create T1. With no family history, neither one of us 'claims' credit for it... So I'm curious :) Our siblings would love to know if it is something related to one of us, just to make the other side feel relieved!
     
  14. missmakaliasmomma

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    which dx was the hardest?
     
  15. hawkeyegirl

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    I suspect that each diagnosis sucks very, very hard in its own special way. But I've seen more people around here say that the 2nd diagnosis is harder than the other way around.

    We have not done Trial Net with my daughter. If she has the antibodies, I don't want that knowledge hanging over my head. I also don't particularly want to put the notion into her head that I think she's likely to get it.
     
  16. TripleThreat

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    I just assume I am the carrier I have type 1 other members of family have it, none on other side of family

    Second and third
     
  17. TripleThreat

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    The third I was in a different country
     
  18. obtainedmist

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    We were told it comes from both parents!
     
  19. nanhsot

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    Double quadruple ditto this. We have chosen not to pursue, as we feel confident we'll recognize and prefer not to have a hammer hanging over us.
     
  20. missmakaliasmomma

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    It seems like every endo has a different view on this. Type 1 does not run on either side of our family. On my side though, there are 3 people (mom and both her parents) with thyroid disorders, my sister with reynauds, great aunt with celiac. On my husband's side (from what he knows) his mom has psoriasis and I'm almost 100% sure that his sister will be getting a turner syndrome dx.

    We ourselves have absolutely nothing... of course we could very well be carriers but we have no idea.

    It made complete sense to me when we were told by a nurse that there's a much higher increased risk of t1 or any kind of autoimmune issue with endocrine/ autoimmune disorders running in the family.
     

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