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18 Month Old Diagnosed with T1D a week ago...

Discussion in 'Introductions' started by jmgotham, Nov 29, 2014.

  1. jmgotham

    jmgotham Approved members

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    Good afternoon,

    Last Saturday, my wife and I had enough of waking up to find our daughter's diaper soaked though (and her insatiable thirst) so we decided to take her to the pediatrician. Type 1 diabetes was the diagnosis after a 3 day hospital stay.

    Needless to say, we were floored. Not our little girl. She doesn't deserve this. I have simply run out of tears to shed.

    Over the course of this week, I've begun to come to terms with our new job as parents, however, my wife is very, very sad. I understand completely. We don't find a lot of stories online pertaining to positive outcomes and lives from toddlers with T1D. I've come to this forum to see some stories of success, coping and positive outcomes from this disease. We understand the challenges, but we also know people live their lives with Type 1.

    Please, if you have any good stories to tell, I'd love to hear them and share them. Our daughter means so much to us and it will help to not feel alone. Can we do this? Is there a light?

    Thank you so much,
    Jesse
     
  2. Jeff

    Jeff Founder, CWD

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    Jesse, welcome to CWD. You're in the right place.

    Our daughter was diagnosed when she was 24 months old. She grew up to become a nurse, got married, and had a son about a year and a half ago. After 25 years living with type 1, she is in perfect health, with not even a hint of long-term complications.

    Our experience is far from unique. Take comfort in that knowledge, and in the experience and support you will find here.

    I also highly recommend our annual Friends for Life conference, held each July in Orlando, Florida. Registration opens Monday, December 1, 2014. A brief introduction is online at:

    http://www.childrenwithdiabetes.com/activities/Orlando2015/
     
  3. BrendaK

    BrendaK Neonatal Diabetes Registry

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    Our son, Carson, was diagnosed with type one diabetes at nine months old. He is now a happy, healthy, well-adjusted, teenage 14-year-old boy. He is very active, he has run 3 half marathons, he is a straight a student, very well-liked by his friends, and is steadily taking over much of his own diabetes care now. Obviously, we are not done raising him, we still have a ways to go. But, I know that it does get easier, even though it is very scary at first. You are in the right place.
     
  4. jmgotham

    jmgotham Approved members

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    Thank you so much.

    I wish there was an instruction manual to have that type of success. Right now, we're just testing when we're worried and trying to get a routine down. Taking each day as it comes...
     
  5. Ellen

    Ellen Senior Member

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    Welcome Jesse, our son was 15 months at dx. A healthy professional young adult today. Your daughter will thrive. For us a couple of secrets to success has been learning, and lots of positive language surrounding the diabetes. Say hello to your wife.
     
  6. sszyszkiewicz

    sszyszkiewicz Approved members

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    ^^^

    that is exactly how its done.
     
  7. Sarah Maddie's Mom

    Sarah Maddie's Mom Approved members

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    Our daughter was older, 4 at dx, but I just wanted to join the chorus of those whose kids have lived with D for ages (my Maddie is about to mark her 12th year with Type 1) and who are otherwise happy, busy, active kids.

    Type 1 complicates things but there is nothing in your future that engaged loving parents can't manage. Please reassure your wife that you daughter will do everything she would have done without D. If she's a dancer, she will dance. If she's a soccer player, she will play. If she develops a travel bug, she'll travel. :cwds: It will take some organization and a little more planning, but eventually it will become second nature.

    I really like Ragnar Hanas' book as a general reference, http://www.amazon.com/Diabetes-Children-Adolescents-Young-Adults/dp/1859593372. Goofy cover, but a seriously helpful book.
     
    Last edited: Nov 29, 2014
  8. jmgotham

    jmgotham Approved members

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    Thanks, everyone! This is just what we needed right now.. :)

    Are there any "must read" threads with info for newbies?
     
  9. nebby3

    nebby3 Approved members

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    My dd was 19 months old. It was quite a shock for us too; we knew nothing about D. Honestly it took me three years to feel like this was our new normal. I cried a lot at first. This is a loss and you must mourn it. If you are worried about your wife, make sure she has people to talk to. It us hard because friends don't fully understand. I was pregnant was my dd was diagnosed and I know my OB was very concerned because I melted down whenever I went there but I had up hold it together at home for my kids and that was the only place where I could let go. Today my dd is 12yo and doing great. Her life is about so much more than D and most of the time she doesn't even mind it. One of the advantages of being diagnosed young is they don't know anything else. Where are you? It is good to meet other d parents in person too.
     
  10. GChick

    GChick Approved members

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    That is understandable when you think about it. If you have a relatively good life with no major problems, you don't generally go around announcing it, right? (though I sometimes do :eek: ) Its just natural that the people who have more problems will be more vocal about it because they are either trying to find ways of either dealing with the problem, or rectifying it. So when you read the dreary stories out there, keep that in mind.

    This from a person that was diagnosed at 3 and who is now 35 (as my sig states)... so, 32 years in (almost 33) and while there have been some "hiccups" for sure, nothing is ever perfect, no complications at this point and am not exactly expecting any any time soon (there's the announcing).

    [edit]
    The worry however is something that will not go away. It will change, it may fade... but it will always be there.
    My parents for instance, stopped worrying about "complications" ages ago. But they are still super vigilant with worries over lows even though mine are ~usually~ fairly uneventful (still have the occasional doozy).
     
    Last edited: Dec 1, 2014
  11. jmgotham

    jmgotham Approved members

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    Thank you, GChick..

    I understand what you're saying. People probably don't come here to brag that often, and that's completely understandable. I'm not sure I would be prone to being like "look at me!" in the midst of people who are asking for help with painful issues.

    It's still nice to hear about people living full, healthy lives with Type 1 and being able to be happy. I've seen several stories describing diabetes as a "nightmare everyday", giving the impression that you're not allowed to be happy while having diabetes or having a child with diabetes. That can't be true and that's not how I intend to describe my daughter's condition to her.
     
  12. Sarah Maddie's Mom

    Sarah Maddie's Mom Approved members

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    Ok, I call BS on the "nightmare everyday". Wherever you read that, just cut it loose. Yes, it's a bother and yes, you have to plan more carefully, but with the right attitude your child can ABSOLUTELY have a very happy, very "normal", very average growing up.

    The vast majority of CWD members come here for support, advice, to share funny stories and yes, sometimes to vent, but I doubt you'd find a single one who would describe raising their type 1 kid as a "nightmare".
     
    Last edited: Dec 3, 2014
  13. Ali

    Ali Approved members

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    Agree and I am the "now grown up kid" with T1". It is a "PITA" no way around that but nightmare no!! I Have too many friends and relatives with much worse, non curable cancer, RA, Aids, ALS, and on and on. You just can not go down that track. All illness is bad and it is always relative. :) sad but true. Ali
     
  14. Christopher

    Christopher Approved members

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    Hello and welcome. I think you have gotten some great advice above and I hope it reassures you that you can do this and your daughter will grow up to have a perfectly happy life.

    As for your question about a thread with advice for newbies, please see the link below. I think the first post is especially important for your daughter since she is a toddler and is probably getting a lot of baths.

    http://forums.childrenwithdiabetes.com/showthread.php?68171-10-Things-Your-Endo-Never-Told-You
     
    Last edited: Dec 3, 2014
  15. jmgotham

    jmgotham Approved members

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    Thank you, Chris! That is an awesome post!
     
  16. joan

    joan Approved members

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    i am so sorry to hear about you daughter. Almost 20 years ago my 21 year old son was diagnosed with type 1 diabetes. It was stressful to get adjusted to our new normal but we did and today he is a senior at the university of michigan and on their lacrosse team. When I think back I really can't believe he has had such a normal life. I can't believe he is a senior in college and has had diabetes 20 years. My belief was that diabetes was never going to hold him back or prevent him from doing things. I did worry a lot when he was small and still worry but he is a happy person who lives a normal life.
     
  17. cdninct

    cdninct Approved members

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    Welcome!

    I thought I'd add another it-will-be-just-fine message to the list! My son was diagnosed at 2-1/2, and he just hit the fourth anniversary of his diagnosis last week. He is happy and healthy. Diabetes is no fun, and it does require time and attention, but it is manageable. We put in the effort we need to put in to ensure that he is healthy, but that is the extent of it. It does not define my son or our family. We live a normal life, just like all the other families we know who are dealing with t1d.

    Take those "nightmare" stories with a grain of salt. Because diabetes is invisible and because so many of us do what we need to do to manage it behind the scenes, it can sometimes seem to the public like diabetes is no big deal at all and does not deserve funding, awareness, etc. Advocates sometimes get a bit extreme in order to draw people's attention to the challenges of living with or managing it. And, let's face it, there are some overly dramatic people in every crowd!

    Your daughter will be fine, and so will you and your wife. It might take a while, and you will have both good and bad days for a while, but one day you will wake up and realize that you are more concerned about toilet training or getting homework done than about diabetes--I promise!
     
  18. jmgotham

    jmgotham Approved members

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    Thank you so much, everyone...

    I've been reading these responses to my wife and they are so very inspiring and relieving to us.

    I smile so much everyday knowing my daughter is happy and getting what she needs to be the playful, fun, little scamp she wants to be. And I'm so happy that I can give that freedom to her everyday.
     
  19. bettycrackpot

    bettycrackpot Approved members

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    Hi there!

    My son is 2, he was DX at 15 months. (husband is also type 1, dx at 12, now 34) we are coming up on our year mark and i just wanted to say it does get easier. Type 1 just makes you plan a bit better. a suggestion: we have found the glucose tabs and cake frosting send our toddler sky high. some experimentation found that a roll of smarties(usa version) (6g) or a roaring waters capri sun (9g) brings cosmic avenger (the toddler) back up without going crazy high. i hope that helps a bit!
     

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