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Sorry for the long post... Have nowhere else to turn...

Discussion in 'Parents of Children with Type 1' started by Emily2015, May 13, 2016.

  1. Emily2015

    Emily2015 Approved members

    Nov 17, 2015
    Dear parents,

    I am writing here mainly because I have no where to turn.. I know that I am not the only parent of a Type 1 diabetes child who panicky every time her other child goes to the bathroom more often or gets another glass of water... I thought it was going to get easier, but it is not...
    I am driving my kids and my DH completely crazy. I spend those few nights when my CGM is not beeping with highs and lows researching stuff about potential cure, life expectancy of type 1 kids diagnosed as babies, their IQ (riiiight...) and siblings risk of getting this dreadful disease... Nobody even my close family and friends can understand me... I don't know how to deal with it. I had that terrible scare with my 4 year old when I got a sporadic 266 on the meter result and then a couple of other high readings back in February, but then I did a 15 min "sugar challenge" like one mom here recommended and he seemed to be ok (120-130) range. I check him once a month after dinner and he usually runs in 120-130 range. Is that normal? Is diabetes brewing inside him? Who knows... Would you say that since he has not gotten worse since February we can safely assume he is ok for now? I checked it again two days ago after a fruit salad and it was 189 and then rechecked 5 min later and it was125... So you have to wonder about the accuracy of the results... Did you parents of non diabetic kids ever get readings that high for no reason? Do you think that since we have given enough time after that dreadful day when he had 166 and 266 readings we can let it go since he would have shown symptoms otherwise? Most importantly, how do you lead a normal life and let your kids have a normal life? Sorry for the long post and thank you for reading.
  2. dpr

    dpr Approved members

    Dec 17, 2013
    I may not be the right person to respond since I have an only child, but I do know quite a few D parents with 2 or more children. First off I have to tell you it really does get a lot better. The first year is extremely over whelming between learning how to treat diabetes and all the emotions that come with the diagnoses. It took me about 2 years to feel I had a really good grasp on treating it. Emotionally it takes a while to get used to the new normal. Everyone is different in how they handle that part of it.

    It seems that you really want to know if you other children will develop diabetes. If that's the case then you need get in touch with the Trial Net people. They will guide you through their whole process. If you would like to know the likelihood of developing T1 as related to antibodies, pm me. Not everyone wants to know so I won't post it.

    As far as your self, you need to take care of yourself too and not just your family. Other D parents are your greatest resource and a huge help. No one understands a D parent like another D parent. Call your local JDRF chapter. Go to diabetes family camp. Ask your endo for resources. Check Face book for D groups in your area. Go on D play dates. The T1 community is your family you never knew you had. You will meet some of the finest people you will EVER meet. It is some what of a paradox, but after meeting the T1 community you will find T1 sort of a blessing in disguise. In my 50 years I have never met a more humble, selfless group of wonderful people. Everyone in our community knows how difficult T1 can be, that's why there are so many resources to help get you through this. If you still feel like your sinking get help. You wouldn't be the first D parent and if you need antidepressants to get you over the hump, do it.

    As far as your D child's health, we are in the golden age of D treatment. With the pumps and CGM's that are out our children and D friends, as far as diabetes is concerned, are going to live long, healthy lives. The research and new technology is going at an incredible pace. I believe in the next 10-20 years diabetes will either be cured or we will have something so good it will be just about as good as a cure.
  3. MissMadisonsMom

    MissMadisonsMom Approved members

    Feb 24, 2008
    I was in your exact position 8 years ago and I truly can say it DOES get better. Madison was dx'd in October of 5th grade and I probably took our non D son to the doctor 4 times in that first year. Every extra glass of water, every trip to the bathroom was a red flag for me. So after the 4th doctor visit when my son just had a stomach bug or something his pediatrician simply told me that I cannot stop him from getting diabetes, I cannot predict whether or not he is going to get it, if it's going to happen it's going to happen and that sucks if it does, but the good news, he said...I absolutely know what to look for in the symptoms, I absolutely know how to take care of him if he does get it, so let him be a little boy and know that I can take good care of him what ever happens.

    Fast forward 8 years - our daughter is away at college handling her D care fabulously and our son is a moody teenager who does NOT have diabetes :) Lord help me if I have to add that into his mix ;)

    Honestly that first year was hard on everyone in our family. But eventually diabetes became just a small part of our family identity and part of our normal. Good luck and please know that you have support here and we do know and sympathize with what you are going through.
  4. rgcainmd

    rgcainmd Approved members

    Feb 6, 2014
    Have you thought of enrolling your non-D child in TrialNet?
    Last edited: May 14, 2016
  5. nebby3

    nebby3 Approved members

    Jun 5, 2007
    Besides the one high number it sounds like the rest of your non D's numbers have been normal. I'd call it a fluke and move on. Trialnet can help catch D early and we have done it but honestly if you are the type to obsess I'd say maybe don't do it.

    How long since your D kid was dx? I think the googling everything etc is normal initially. I know I like to thoroughly research things but if it's been a few months it might be time to seem out a counselor or pastor to talk to. Does your spouse think it is consuming you too much?
  6. Nancy in VA

    Nancy in VA Approved members

    Jul 16, 2007
    I'm with the poster above that says you can't stop your child from getting diabetes if they are going to get it.

    you are still in the mourning period, it sounds like to me. Your child getting diabetes is something you need to mourn - mourn their future that's going to be different than you expected, etc.

    I agree with the others that you need to take care of yourself. You have got to stop googling and doing all of that research, and just focus on your child having a great life and diabetes being barely a blip on the radar. It is just normal in our house, like brushing our teeth or cleaning the house.

    You may also want to consider talking to a counselor, someone that your Endo can recommend specifically for parents of children with chronic diseases. They may help you with some coping skills.

    Good luck - as others have said, we've all been there.
  7. sszyszkiewicz

    sszyszkiewicz Approved members

    Dec 24, 2013
    If you are anything like me, T1D seems worse than it is if you are tired. if you had a rough couple of nights in a row it is easy to despair simply because you need rest.

    T1D is indeed serious business, but the more you read /learn the less scary it will become. For the first year after my son's diagnosis I couldn't stop reading about T1D. I finally just let it consume me because I accepted the fact that life changed suddenly and as a parent I had to acclimate myself to the new world we were all living in. I believe its our parental instincts kicking in as we scramble to learn everything about this disease, both good and bad.

    So roll with it. At some point (probably soon) you will get what you need to feel comfortable in the T1D world, and the sun will simply rise one morning and you will be ok. You will be (far) more knowledgeable for the effort.

    If you want an answer about your other child, Trialnet.


    T1D will not care when you discover if your child has it or not, so better safe than sorry. Get the answer for free and if they do detect antibodies you can participate in research that might make a difference, which means you are not just sitting around waiting for stuff to happen to you. You are on offense.

    Finally i want to echo what dqr said above about the golden age of diabetes care. Consider the fact that even 5 years ago having access to an accurate cgm was pretty rare. Now the technology has evolved to the point where an "artificial" or "bionic" pancreas is possible keeping the patient a steady 140 or so with little or no human intervention. Not bad! It will only get better.
  8. rgcainmd

    rgcainmd Approved members

    Feb 6, 2014
    I wish this Forum had a "Like" button like some other forums do, because I'd definitely give this one ^^^ a like!
  9. Emily2015

    Emily2015 Approved members

    Nov 17, 2015
    I want to thank everyone for responding. Yes, T1D consumes me to a point, I can hardly think of anything else. Maybe, I should see someone. Even my DH is getting annoyed... I read that the risk of the siblings getting T1D is around 10-20%, but it is even higher if the child is diagnosed before the age of 5... All my other kids are older so I don't know if that risk translates the same way or not. TrialNet results take forever, right, do you get the positive results first? (If positive?) or you get the letter and then those who tested positive get a call? How long is it usually? Thank you again! God bless you all!!!
  10. wilf

    wilf Approved members

    Aug 27, 2007
    Stop worrying about the other kids, and stop testing your 4 year old. The small possibility of another diagnosis is not an issue worth wasting time/energy about. Either it happens or it doesn't - and if it does you deal with it then.

    Focus on doing what you must do to manage your child's diabetes, and more importantly on getting your life back. Get off-line and back into the lives of your family and friends. Plan and go on a vacation. Read a book. Go for a walk. Have fun! :cwds:

  11. nebby3

    nebby3 Approved members

    Jun 5, 2007
    I'm not against Trialnet but it is not a once for all answer. All it tells you is if your child has antibodies right now at one point in time. They could not have them when tested and start developing them the next day. They could have them but the not develop diabetes for years or ever. A certain amount of worrying and obsession is normal and even helpful early on. It's hard to tell in an online forum when a stranger's amount of worry has crossed the line. You sound like you could be a candidate for needing outside help though. One thing I realized recently (after 12+ years of D) is that my dd's disease is one of the least interesting things about her. Don't make your child's life all about this disease because it is all you focus on.
  12. rgcainmd

    rgcainmd Approved members

    Feb 6, 2014
    But TrialNet tests your non-diabetic child(ren) in an ongoing manner, if I'm not mistaken. And if a child has a certain number of antibodies (the exact number of which can be found in one of Joshua Levy's posts), they will go on to develop Type 1 within the time span indicated in Joshua's post. So, if I had another non-T1D child (who met the eligibility requirements for enrollment in TrialNet, which my older daughter unfortunately does not), I'd jump at the chance to have them participate in TrialNet.

    I agree that worrying and obsessing to the extent that the OP describes indicates a need for "outside help", as this degree of anxiety serves no constructive purpose and negatively impacts other family members.
  13. joshualevy

    joshualevy Approved members

    Dec 30, 2008
    I've made two postings related to TrialNet data. The first one is here:
    this one contains the most up to date data, and the exact number you mentioned above.

    This is an earlier post:
    although this data is a little older, it contains more details about how long after different autoantibody counts, people are diagnosed, on average.

    Going back to the original posting for a minute, and especially this passage:
    My opinion is that if you are driving your DH crazy, then you need to do something to stop that (not to mention driving your kids crazy). When your child has type-1 diabetes, your spouse is the most important support structure you have, and visa-versa. If you are driving your spouse crazy, that is bad.

    I think other people will have better advice than I in this matter, but I would consider joining a support group. An in-person support group if possible, an on-line support group if not. Even going to a few "parents of type-1 diabetes" events might be very helpful. Another option is to try to channel your nervousness. Try to harness the research you are doing anyway, and put it into something productive. Maybe volunteering or something. Also, there are psychologists who specialize in type-1 diabetes or chronic diseases; some even do family therapy. If there is something like that in your area, you might consider it.

    Finally, if you are going to test your daughter (who does not have type-1 diabetes) each month, then I would test her first thing in the morning, and not after meals. This is a "fasting" BG test. I'm not a doctor: this is not medical advice. But my understanding is that fasting BG numbers are a lot more consistent than after a meal BG numbers. Therefore, if she starts drifting high, it will be more noticeable. When you test after a meal, you never know if the slightly-higher number is caused by eating more carbs, or maybe faster absorbing carbs, or maybe just less fat. When you measure fasting numbers, they are usually in a pretty tight range.

    One last thing, if you are surfing the web looking for a cure, then please read my blog, so at least you are not duplicating work I've already done:
    And you can start out by reading the Introduction:

    Joshua Levy
  14. andiej

    andiej Approved members

    Dec 30, 2013
    It sounds to me that you are struggling with your childs diagnosis on so many fronts. Do you have access to Psychological support? Here in the UK many of the T1 Teams have a psychologist to support all family members. I remember googling all the things that you are, somewhere down the line comes acceptance of the condition, life moves on....just in a different way. Here is a well known poem that sums this up beautifully.

    I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

    When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

    After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

    "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

    But there's been a change in the flight plan. They've landed in Holland and there you must stay.

    The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

    So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

    It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

    But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

    And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

    But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
  15. Snowflake

    Snowflake Approved members

    Dec 1, 2013

    On the process question: My 4 yr old non-d son has done Trialnet blood draws three times. All three have been negative. It took at least 4 weeks to get the negative results letter the first time. As I recall from other posts I've read on CWD, if the child is antibody positive, you get a phone call much quicker, within a week or two.

    I know this is not a guarantee that he won't ever get diabetes (we know more than one family where one kid was dx-ed as a toddler, and sibling dx-ed a decade later as a teenager). But it does allow me to relax for a good long period of time after we receive each result. We don't do random finger pokes for our non-d children -- we only do them for very strange circumstances like unexpected wetting accidents and unusual illness symptoms. Since we started doing Trialnet three years ago, I would guess that I've only poked him twice a year.

    I totally sympathize with your situation. I've been there at points, too. After all, it's pretty legitimate not to be able to think of anything else when T1 is buzzing you awake at 3 a.m. every morning! :) Meeting and talking with other parents is a good place to start. And your T1 child's endo (if you have a responsive one) can be an invaluable resource to answer some of these questions.
  16. hawkeyegirl

    hawkeyegirl Approved members

    Nov 15, 2007
    This. A hundred times this.

    I've been at this for almost 9 years now, and I may have checked my non-D daughter twice, near the beginning. There is a 90-95% chance that your other child will NOT get D. Why on earth would you carry the stress around for something that has not happened yet, and most likely will never happen? And more importantly, why would you want to inflict that worry and stress on your perfectly healthy child?

    Please go talk to someone. While I understand your fear, this level of obsession is not healthy for you or your family.
  17. Beach bum

    Beach bum Approved members

    Nov 17, 2005
    You definitely are grieving. But, as someone who has been through this for 10+ years, you've got to "start living or start dying." Meaning, it's time to emerge from your grief. Ask yourself this question. Are you testing your other child for their benefit (in hopes of catching diabetes early) or for yours (the comfort of seeing a normal number)? Think of the fear you are putting in that child every time you come at them with the poker, and the look on your face when you see a number that is concerning...
    Yes, what I'm saying is probably harsh, but that is what was said to me when I was frequently checking our other daughter (yes, she was diagnosed, but she is an identical twin and she had all the markers too). But, regardless, if your other child is going to get diabetes, there is, unfortunately, nothing you can do to stop it.

    You might want to consider TrialNet. But remember, you may get a result that you might not be ready to handle. I would talk to your team about your fears and ask if there is someone on staff who can counsel you. Many of us here were saddled with such guilt that it did make us anxious, and as a result we (myself included) made the choice to get help. Talking about my fears really put things into perspective for me and helped immensely.

    I don't know how long your child has been diagnosed, but those first few weeks/months are scary and overwhelming. You second guess yourself as to what you might have done wrong. But, let's get this straight:
    There is nothing you did to cause diabetes in your child
    There is nothing you can do to stop your other child from getting diabetes if that is what is in the cards
    There is nothing you can do to cure them (leave that to the scientists, they really are working on it)

    What can you do:
    Focus on dealing with diabetes in your everyday life
    Focus on being mom
    Don't let diabetes control you, you control diabetes
    If you have concerns, talk to your team
    Enjoy your kids and learn to live with your new normal

    Diabetes is challenging, some days it absolutely sucks, but it does get easier and the good days outnumber the bad. Really, they do.
  18. quiltinmom

    quiltinmom Approved members

    Jun 24, 2010
    I've been there--I've been the one annoying everyone around me talking about diabetes all the time. :). We've probably all done it from time to time.

    Obviously I can't make any guarantees, but it might help you feel better that my 6 year old had some upper 200s numbers at one point a year ago, I was totally freaking out and everything...a year later he's still fine, no diabetes. Higher numbers can happen for many reasons, diabetes is only one of them. :)

    Trial net may help ease your mind. Sometimes just not knowing can drive you crazy, so even if he tests antibody positive, then at least you know. It's a personal decision; knowing isn't helpful for everyone.

    You need a break! Diabetes is such an emotional drain, especially in the beginning. You may not be able to take a physical vacation (although your husband would probably do a fabulous job taking care of things if you got a hotel room for one night). There are ways to take mental vacations. Like take a whole day's vacation from googling or reading anything about diabetes. Spend the time doing something else you enjoy--whatever your hobbies were before diabetes. Or find a friend to go to lunch with, and make a pact that you will not discuss anything diabetes related. It truly is freeing, once you realize the world keeps turning even though you're not talking or researching or thinking About diabetes. And it doesn't make you a bad mom either.

    You may also want to seek out a counselor. You'll benefit most if you can find someone who specializes in coping with chronic disease, or something like that. Even one or two sessions may give you the relief you need. If not that, maybe seek out another mom who understands what you're going through. Sometimes all it takes is an understanding friend, someone who can relate.

    There are lots of good suggestions here in this thread. It's up to you to decide which ones are helpful, which aren't. when it comes down to it, it's about gaining the right perspective. Right now it seems your perspective is a little off, which is not unexpected, after the trauma you've experienced. But you will eventually heal, if you let yourself, and it will be much easier. But you have to let go of the hurt...which is sometimes scarier than holding on. For me it was a conscious choice, not something that just happened eventually. Pm me if you want to talk more. :)

    Good luck! You WILL get through this! (((Hugs)))
  19. mmgirls

    mmgirls Approved members

    Nov 28, 2008
    So I am that person that had the other shoe drop, my only 2 children both have T!D.

    We did Trial net from age 2 for my youngest because oldest was dx 2.5 years before she was born. Trial Net helped me catch my second DX before any clinical signs or symptoms. She did not have increased bathroom trips, she did not lose weight she was not more thirsty. She was more hungry, tired, emotional with an DX A1C of 5.7.

    She has never been "sick" from Diabetes, never DKA, Never missed school because of her new DX, Never admitted to a hospital. She has had more bloodwork and exams than the whole family combined. She was too younge to opt out of my choices for her. And she did a lot of tests etween Trial Net and the Oral Insulin study that she did up to her DX.

    Once she failed a second OGTT and I had been seeing the hunger/tiredness/ and emotional outbursts, I knew this was it. We moved from "trying to prevent and helping a scientist much smarter than I", gather data to just having 2 kids with T!D. We have not and do not at this time continue with further follow up with Trial net. My reason's are because I don't want to subject my youngest that no longer wants to participate to look at her sister that does not do the extra blood draws." and say why do I have to, and she does not! because they now both have T1D.
  20. MomofSweetOne

    MomofSweetOne Approved members

    Aug 28, 2011
    As a sibling, the fear is there. At least it was for me. I don't remember my parents ever verbalizing concern about us developing T1D as well, but at least for me, the dread was pretty intense. Back then, the thought was that if a sibling made it to 18 without developing it, the odds dropped to the same as anyone else. I celebrated internally when I hit that age. It was never discussed, but it was significant enough I remember it. So, I'm going to suggest that it might be a RELIEF to your non-D kiddos to know their BGs are testing in range. I know several adults with T1D who regularly check their own kids...and at least one 3 year old thinks it's fascinating and cool. The lancets aren't like they were in the '80s, so the pain is so minimal.

    Someone (Joshua Levy?) posted a study on here a while ago saying that a third of siblings of T1Ds that are later diagnosed are in DKA a third of the time at their own diagnosis. That alone would convince me to have other kids in Trial-Net, to avoid the risk of DKA. I caught the symptoms in my daughter before DKA, but her A1C was still a 13. If I'd known about Trial-Net, her body might have been spared that stress. If you read old posts about mmgirls' 2nd diagnosis and their transition, it would be what I would want a second time around.

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