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My 5 year old daughter was just diagnosed with type 1 diabetes. I feel lost

Discussion in 'Introductions' started by Lexified, Sep 30, 2013.

  1. Lexified

    Lexified New Member

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    My daughter, Lexi, was just diagnosed with type 1 diabetes on Tuesday. Took her to the doctor for what I thought was a bladder infection.. sent to the hospital and hours later my life was turned upside down. I have taken in so much information over the past few days but still feel completely lost.
     
  2. danismom79

    danismom79 Approved members

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    That's exactly the reason I took my daughter in 5.5 years ago. Hang in there. It all seems overwhelming right now, and you'll experience all kinds of emotions, but it does get better.
     
  3. Christopher

    Christopher Approved members

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    Welcome,

    The early days are very tough. Just know that in time, you will have a much better perspective on things and you will see that it is possible to fit diabetes into your life and still do all the things you did before.


    Here are some books you may find useful:

    Understanding Diabetes (aka The Pink Panther book)
    by Dr. Peter Chase of the Barbara Davis Center at the University of Colorado.
    http://www.childrensdiabetesfdn.org/publications.html

    Think Like a Pancreas: A Practical Guide to Managing Diabetes with Insulin
    by Gary Scheiner, Barry Goldstein
    http://www.amazon.com/Think-Like-Pan.../dp/1569244367

    Sweet Kids: How to Balance Diabetes Control & Good Nutrition with Family Peace
    by Betty Page Brackenridge, MS, RD, CDE & Richard R. Rubin, PhD, CDE. Published by the American Diabetes Association, 2002. 250 pages. Softcover.
    http://www.amazon.com/Sweet-Kids-Bal.../dp/1580401244

    Type 1 Diabetes: A Guide for Children, Adolescents and Young Adults -- and Their Caregivers
    by Ragnar Hanas, M.D. Published by Marlowe & Company, New York,
    http://www.amazon.com/Type-Diabetes-.../dp/1569243964


    Finally, in addition to the forums there is a chat room here where you can talk to other parents in "real time", day or night.

    http://www.childrenwithdiabetes.com/chat/


    Also, I would recommend creating a signature with some basic information about your child (age, type of insulin used, etc). This information will help people give you the best answers for your particular situation. Click on the "User CP" at the top left of the screen. Then click on "Edit Signature" and add the basic information. Then click "Save Signature".
     
  4. Lexified

    Lexified New Member

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    Thank you , I will try those books.

    I tried to go to the "chat" but it wouldn't let me for some reason.
     
  5. Sarah Maddie's Mom

    Sarah Maddie's Mom Approved members

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    Same story here. A 4 year old who had never wet the bed was suddenly doing it nightly. I thought it was an infection or perhaps preschool "stress":p

    The first 6 months to a year are the hardest. You'll get through it, we all did, even when we thought we wouldn't.:cwds:

    Post in the main parents forum if you have any questions.
     
  6. missmakaliasmomma

    missmakaliasmomma Approved members

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    Wetting the bed was one of the major things we noticed too. My daughter was 17 months and we put 2 overnight diapers on her and she was SOAKED like 2 nights in a row. That and the constant thirst and crankiness.

    It really does get a lot easier. We all know how devastating it is in the beginning. I'll never forget our stay in the hospital & how upset I was. Just looking at my baby on the table sleeping and her not knowing what the hell was going on within her body (makes me want to cry again!) You never really stop worrying, but I think you just feel more comfortable day to day with managing it so it doesn't seem as crazy as days go on. It's just life.
     
  7. obtainedmist

    obtainedmist Approved members

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    That "deer in the headlights" feeling will subside and little by little, you will become more confident with juggling all the details associated with this beast! Get the support you need for both your daughter AND yourself! You will get through these tough times...we are pulling for you!
     
  8. Lexified

    Lexified New Member

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    Thank you everyone. I am sure that with time then things will get "easier" as we cope. My daughter is so strong. I try not to get too upset around her but when I do she breaks my heart even more by reminding ME that everything will be ok.

    Going through a bit of denial stage right now I guess.. Her levels keep going extremely low due to what the doctor is calling the "honeymoon" stage. Makes the denial and wanting it to be something else worse..

    She is doing well with the finger pricks... not so much with the insulin shots. She is using a "pen" which is supposed to be the best for children from what I am told. However, she is getting at least 4 a day. Any suggestions for helping her cope with this? I try to involve her by letting her choose where her site will be and she likes writing in her own log book when I write in mine.

    Any advise would be helpful
     
  9. MEVsmom

    MEVsmom Approved members

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    Welcome

    My 7 year old daughter is newly diagnosed as well. I know you will find some great information here.
     
  10. Joanne91280

    Joanne91280 New Member

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    One day at a time :)

    My 7 year old was diagnosed in jan and yes its hard but now I cant remember life without diabetes its just daily routine like going to school, you will get there xx
     
  11. Christopher

    Christopher Approved members

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    Maybe using a sticker chart and after a certain amount of shots she gets to pick out a toy or a book or something she likes. Also, make sure you are using room temp insulin and you could numb the site with an ice cube before the injection.

    There are insulin pens and there is the Inject-Ease. You are probably talking about the Inject-Ease, but if not, many people find it very useful for giving young children injections as it basically hides the needle.

    Hang in there.
     
  12. danismom79

    danismom79 Approved members

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    I see you're using NPH and Humalog. We used NPH for a while and liked it; others find it to be the worst thing ever, especially with a young one. You'll learn soon enough whether it's the right regimen for your daughter. If you switch from pens to vials, you can mix the NPH and Humalog in the same syringe and eliminate at least one of those shots.

    ETA: I'm assuming your schedule includes something like NPH + Humalog at breakfast.
     
  13. pianoplayer4

    pianoplayer4 Approved members

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    Hi, I'm sorry you have to join us!

    I just wanted to encourage you that your daughter will still be able to do EVERYTHING that she would have done,I have had type one for almost four years and I'm a freshman in college right now, I'm in a super intense program and I LOVE it! It's hard to imagine now but one day all this will feel normal.

    and that NONE of this is your fault!!!!!!!!!!

    About the injections, I would say simply doing them quickly and giving her a hug and moving on. The bigger deal you make out of the the bigger a deal she'll make out of it.
     
  14. MEVsmom

    MEVsmom Approved members

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    We are about 10 weeks out from diagnosis and using NPH. We really hate it because our daughters eating schedule is very irregular due to extracurricular activities, but we are trying to not be too pushy and try to get use to everything. We use a syringe and mix the NPH and Humalog in one syringe. She only has two injections a day unless she has a reading over 300 at lunch then she would get a correction dose. She has only had a correction once in the last 6 weeks or so. If your daughter hates the injections it might be the plan for you, especially if you get inject ease or whatever and hide the needle. Our daughter doesn't mind the injections and would take 20 a day without complaining at all, so it just really makes us crazy right
     
  15. Lexified

    Lexified New Member

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    Thank You

    I just want to say thank you to everyone, It feels so GREAT to have people who know what I am going through be so supportive - - especially people who don't even know me or my daughter. My heart is filled with even more love and compassion tonight because of all of you.

    My daughter is using the insulin pens right now.

    Her first day back to school (grade 1) is tomorrow.. I am so nervous. Her school is great, only grade K to Grade 2, but she is the only child at her school with diabetes..

    Once again, thank you everyone for your warm welcomes and kind words.

    xx :)
     
  16. Sarah Maddie's Mom

    Sarah Maddie's Mom Approved members

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    We all remember what that first year was like :cwds:

    Do you have plans to develop a 504 plan at school?
     
  17. MEVsmom

    MEVsmom Approved members

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    My daughter is the only one at her Pre-K through 3rd school also. We have another special needs daughter, who is completely disabled and dependent and consquently gets tons of attention. Strangely my T1 daughter sort of likes the extra attention for herself.

    I hope your daughter sees being the only one as something special and not something to make her different. Good luck!!!
     
  18. Ti'sMom

    Ti'sMom Approved members

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    Sorry you had to join us, but I honestly think you couldn't be in a better group!! My son was diagnosed August 2012 the week school started (2nd grade) and it was a whirlwind. I learned soooo much from this site though! It's amazing! Anyway, my ds was a total needle phobic so I know where you're coming from. He plays with his ipod or reads when we do site changes and cgm changes. He was only on shots for 4 months. It really helps to keep his mind on other things.
    He is the only type 1 in his school as well. Look into a 504 asap! We had a lot of issues with the school nurse last year, I think she thought I didn't know better, and we needed a 504 badly!! We just had our 504 meeting this morning and I got all that I asked for, thank God!
    Keep reading all that you can, and don't hesitate to come here with questions. We're happy to help!!
     
  19. Lexie251

    Lexie251 Approved members

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    Same her, I took her in for bed wetting, I thought for sure it was because she had a bladder infection. When they told me she had sugar in her urine. My response was I'll take away the cookies and fruit roll up's. lol!!! They told me there was a little more to it then that. I spent the next 3 days crying. Well I still cry, just try not to in front of her. It has been rough trying to figure out what works but my best advice is to figure out what works for her, and try to stay calm. Everyone told me it would get easier and it has cause I researched till my eyes burned. Good luck I'm not much help, since in only a year into it and my daughter is still honeymooning at the moment.
     

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