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Your kids without T1

Discussion in 'Parents of Children with Type 1' started by KylorsMom, Mar 28, 2013.

  1. KylorsMom

    KylorsMom Approved members

    Mar 27, 2013
    I was wondering about those of you with other kids who have not been dx. Are you worried they will develop T1? I actually checked my middle daughters sugar this morning based on her behavior.... is that just crazy? Any one else keeping an eye on the other kids? How likely is is that they will be dx??:eek:
  2. hawkeyegirl

    hawkeyegirl Approved members

    Nov 15, 2007
    Very generally speaking, incidence of sibling diagnosis is between 3-10%. So at worst, there is a 90% chance that any specific sibling will NOT be diagnosed with D.

    I think it is very normal at first to be worried about your other kids. As a rule, I do not check my daughter randomly. If another child starts displaying symptoms, you will recognize them early. As time goes on, you will not think about this nearly as much are you are right now. :)
  3. mom2Hanna

    mom2Hanna Approved members

    Jul 6, 2008
    So this weekend I was away all day and my husband had texted me to say my 3 yo had a low fever and a croupy cough. And when I got home, she smelled like ketones. So I took a deep breath, stayed calm, got her to eat and drink something and it went away. She's fine, other then the smell and that she slept a lot more then normal, she had no signs.

    Ok so I admit to testing her bg, but it was fine. I really know it was an over-reaction, but she didn't mind (she's a pretty laid back kid) and it made me feel better. I know kids can throw ketones when they are sick logically but it's hard not to panic.

    Lol, my 12 yo will complain she's thirsty and I say how thirsty? And she will answer no you can't test me mom!
  4. Becky Stevens mom

    Becky Stevens mom Approved members

    Oct 14, 2008
    Hi Kim :cwds: I see that you are very new to our diabetes family. Im sorry about your son's diagnosis. My son Steven was 3 years and 4 months at diagnosis. I was always on high alert after Steven's diagnosis. I watched Harry like a hawk and always thought I was seeing something that might indicate type 1. He got up to urinate in the middle of the night once and sure enough, I tested him the next morning and was terrified that he was 104. Now, almost 9 years later, he doesnt have type 1. I know that the risk is there, its a bit higher for him being the sibling of a type 1. But Ive calmed way down about it. You will too, promise :cwds:
  5. Pauji5

    Pauji5 Approved members

    Mar 16, 2008
    we do have the 2 out of 3 kids with type 1....our middle son was diagnosed 3 1/2 after our youngest daughter.....

    I did test the non d boys once in a while, especially in the very beginning, but gradually, I stopped. There isn't any good in worrying if you don't have too, and we did recognize the signs almost immediately...he was diagnosed very early...

    no, we don't test our oldest now. It's been almost 6 years.... If there becomes a need, then we will....I know it's so hard in the beginning, but try not to worry.....
  6. obtainedmist

    obtainedmist Approved members

    Aug 3, 2010
    We had our son do TrialNet and that came back neg. for antibodies. Not a 100% guarantee, but it still kept us from the worry.
  7. sugarmonkey

    sugarmonkey Approved members

    Feb 16, 2008
    I have tested my DD a few times. If she's shown symptoms that have me concerned I'll test her. Recently she started getting up to the bathroom at night. I tested her and she was fine. I don't just test her randomly. In the 8 years we've been dealing with this I've probably done it maybe 3 times.
  8. quiltinmom

    quiltinmom Approved members

    Jun 24, 2010
    What you are feeling is very normal. In fact, the first question out of my mouth was if the other kids might get it. I was told it was more likely a "fluke" (my word, not his) but its hard not to worry. I have tested other kids when I had a reason to but I don't just test at random. A few times one of my kids has asked to test his blood and I will allow it if be REALLY wants to but more often he pulls out the pricker and then changes his mind. But I digress.

    I figure it would be irresponsible to not check bg's if I have a legitimate concern, or I would feel really stupid if another kid developed I and went undiagnosed for a long time. But I don't test other kids hardly ever.

    For me it was something I had to choose not to worry about. You just have to put it out of your mind. If they get it they get it. Not much you can do about it but at least now you'll know what to do. As time passes you'll think about it less and less. THe feelings from he first dx will fade and it gets easier. You'll always keep your eye on them but the scary-ness goes away.

    But no, you're not crazy at all. You'd be crazy not to worry about the others.
  9. Turtle1605

    Turtle1605 Approved members

    Jan 6, 2012
    My daughter who is not T1D is horrified of needles...and I mean horrified. The last time she was around her brother when he got a vaccination at the doctor's office, the doctor thought he was going to have to sedate her!

    The first month after her little brother was diagnosed, she was crushed and very concerned about him. She's always been a "little mommy."

    At around the second month, after things had settled down a bit, she began the worrying and began asking me if she was going to get it. My daughter is a BIG WORRIER and I can't stress that enough. Somehow, I managed to convince her that she is fine and that she is not to worry until I tell her she needs to worry. I have always been very honest with my children about whether shots will hurt, if they were going to get a shot when they went to the doctor...I never saw a reason to lie to them. This helped because now, she truly tries not to worry and only occasionally will ask me if she needs to worry yet.

    Yes, I have checked her little finger a few times in the middle of the night...just to make sure she still doesn't have anything to worry about and to prove to myself that she does not have it.
  10. jbmom1b2g

    jbmom1b2g Approved members

    Aug 10, 2011
    I don't worry to much. We did the trailnet also and my youngest came back negative. My son however refused to do the test, and they wouldn't do it with out his signature. He was 9 at the time. Sometimes I do worry about my nieces and nephews though.
  11. greenpalm

    greenpalm Approved members

    Mar 12, 2013
    I was planning to have my sons do this as well. I was also going to pass the TrialNet info along to my brother, and sisters in law. My brother's kids, and one cousin on my husbands side are the only ones young enough to test (my husband is the youngest of 6 children. My kids' cousins on that side are MUCH older. In fact, Eleanor, is the youngest grandchild on either side.

    I mentioned to my boys that I'd like to have them screened, and the 12 year old said, "If I had type 1 diabetes, I'd jump off a bridge." My heart just sank. I feel like I've heard more stories in the last 18 days about families with more than 1 T1D child than I have families with just one! And it's true, the 12 year old (he's the one I suspect may be somewhere on the far end on the autism spectrum) he is very inflexible and resistant to change. It would be very difficult for him to adjust to this.

    I was also going to say that I used my husbands meter to check myself fairly often during all my pregnancies. I was just curious, but I had no problems.
  12. Jennifer126

    Jennifer126 Approved members

    Feb 1, 2013
    I am going to be doing the Trialnet for my daughter so I can feel a little better but I do not test her. I tried once just to show her what Joe goes through.... I didn't get enough blood to get a number! And she ran from me! LOL
  13. StacyMM

    StacyMM Approved members

    Oct 22, 2010
    I never really focused on it. We have no family history of any auto-immune issues and truly thought of DD's diagnosis as a weird fluke. We did do family BG checks a few times a year - we'd all test our numbers before dinner one night, more as a sign of camaraderie than anything else - and DS once asked me, a few years ago, to test him because he felt weird for a few days and was apparently thinking about it.

    That said, you can see from my signature that DS has since been diagnosed with diabetes - 6 1/2 years after DD. When it started, though, I just knew. I saw the symptoms and thought to myself, "It's time to check his BG." We caught it early. I never had that thought until it happened and when it did, it was really obvious. If it ever happens to you, and it really isn't likely (something like 95% against?), you will know. Worrying now won't change anything.

    As to how common it is...I did ask our endo how many families they have with multiple children diagnosed. I figure they have thousands of patients (it's a large practice at a Children's hospital) and the response was "quite a few" and a mention of a "few dozen, maybe?" They have ONE family with three. I don't have to worry about that since we only have two kids ;) And it must not be too common among OmniPodders because Insulet cannot seem to understand that I have two kids on my customer account. :rolleyes:
  14. Lakeman

    Lakeman Approved members

    Nov 10, 2010
    My son, as a sibling has a higher chance of getting it. So yes I do checks about once a month. I don't get worked up about it, I just want to know. the first few times I did not know how to interpret the numbers so I think it is useful to do it once in a while to have a baseline or a sense of what is normal and when is the best time to test.
  15. LJM

    LJM Approved members

    Mar 10, 2008
    I have worried and I have checked with urine stick (never using lancet). But that seems to have subsided the further we have experience with diabetes.

    I choose not to worry. I will know it if I see it again, KWIM?
  16. KylorsMom

    KylorsMom Approved members

    Mar 27, 2013
    Thanks everyone, I AM really new to all of this. And as much as I would never with this on anyone, at least I know if it happens to one of the other kids I will know what to do, and really our life has changed so much that it might not be as hard a second time around. Just wondering if I was weird or not ;) Now if I can just stop reading all the scary low posts and stories out on the internet... pretty sure I won't be able to sleep soundly for some time :eek:
  17. kirsteng

    kirsteng Approved members

    Dec 30, 2012
    My youngest was d/x'ed 3 months ago. I tested his older siblings within the first week, just to give myself a bit of reassurance. Then we went through the Trialnet study, and they were both negative. We were told that 90% of kids who go on to develop T1 will have at least one positive marker by the age of 5 - so since both of mine are older than that and negative, I felt much better about their likelihood of staying healthy.

    I understand the fear though!
  18. CaitlynGrisham

    CaitlynGrisham Approved members

    Mar 12, 2010
    I am not a mother, but I have a little brother whom I worried about incessantly for the first few years, to be honest. I used to test him in his sleep when he was little (I am 6 years older than him; I was diagnosed shortly after he was born) to make sure that his numbers were fine. I used to cry because I didn't want him to have to deal with what I dealt with on a daily basis.

    I was the one who made my family go through the trailnet process. Thankfully, he's negative for all of the antibodies they test for, and he is doing very well. Of course, that's no guarantee that a diagnosis won't come later, but for now, he's in the clear.

    I feel like worrying is natural. Concern is natural. My mom used to say that the worrying I did was and is a side-effect of love.
  19. nebby3

    nebby3 Approved members

    Jun 5, 2007
    It's completely illogical but I worried most when my younger dd was the age my cwd was at dx. It was hard to see her in the same clothes her sister had worn and to remember how thin she was at one point. I know it is no less likely they will get it now but I don't worry about it anymore. I am pretty sure I would catch the signs early if they did.

    Btw, trailnet tests for antibodies that could start any time. My kids have done it too but a clear test today doesn't mean they won't have D in the future.
  20. Beach bum

    Beach bum Approved members

    Nov 17, 2005
    Being so early in your diagnosis, this is a completely valid fear. I think we have all checked our other kids at one point or another. In our case, we have identical twins, so the chances of that other shoe dropping if 75%.
    You can participate in TrialNet, you probably see the signs for them at the docs office, they can do it right on site for you, and depending on if you are at a large clinic, they may have a office right on site (ours does).

    I think the important thing to remember is that if you are going to check your child, keep their feelings in mind. Don't just come at them with the poker and say "I need to test you!" I actually check my other daughter with urine strips, for some reason she's more willing to do that.

    Now, my non-d daughter wouldn't mind getting diabetes because that means she can go to diabetes camp with her sister for more than just the sibling week:eek:

    You will find that as time goes by you will worry less all the time, there will still be times when they get sick or thirsty or just pee a lot one day and you get that fear, but you will see that it does subside. Even now, 7 years in, we still have our guard up and keep an eye out...

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