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Discussion in 'Parents of Children with Type 1' started by 4monkeez, Aug 28, 2010.

  1. 4monkeez

    4monkeez Approved members

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    Hi All, My name is Kate...my 6 year old was diagnosed with type 1 last week...just looking for someone who understands as I feel as though I am losing my mind. I am a stay at home mother of 4. My six yeasr old twins, a four year old and a two year old. Not really even sure what else to say....
     
  2. Christopher

    Christopher Approved members

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    Hello,
    I just wanted to say welcome, but sorry you have to be here. You have found a great site for support and information. The early days are very tough, you are overwhelmed emotionally, sleep deprived, and scared. But over time you will become more comfortable dealing with all the things you need to do to live with this illness. You will find a "new normal" believe it or not and things will get into more of a routine. All the parents here are proof of that.

    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-Pancreas-Practical-Managing/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-Balance-Diabetes-Nutrition/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-Adolescents-Adults-Caregivers/dp/1569243964


    Not sure what your school situation is, but here is a link to a thread that has a lot of info about dealing with schools.

    http://forums.childrenwithdiabetes.c...ad.php?t=20042


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

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

    Hang in there :cwds:
     
    Last edited: Aug 28, 2010
  3. valerie k

    valerie k Approved members

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    welcome to our family. Please feel free to browse the forums and ask ask ask any question you want. Sorry you have to be here, but we do understand. :cwds:
     
  4. fredntan2

    fredntan2 Approved members

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    Yes, welcome

    we all understand
    we've all been there.

    please vent, ask questions, etc etc
    don't be shy

    Hugs to you
     
  5. Becky Stevens mom

    Becky Stevens mom Approved members

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    Hello Kate and welcome:) Im your neighbor to the left from CT. We love going to Misqumicut , much better then our beaches. My goodness! you do have your hands full now dont you?!;) I promise you, we all do understand what youre going through and are here to support you any way we can. This is a whole new way of life for you and your family so it will take some getting used to. for now be patient with yourself, I know this is scary stuff but youll be fine:cwds: Dont hesitate to come back in here and post in the Parents of children with type 1 section about any questions you have or when you need to vent. Many of us are on Facebook as well so let me know if you FB and would like to add some of us. Not that you have any time mind you with that lovely family of yours:cwds:
     
  6. kiwiliz

    kiwiliz Approved members

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    Hello Kate. You have your hands full with 4 little ones - even without your little poppet being diagnosed. No wonder you feel swamped. We all did too - but having so many little ones - it must be very scary. It does get better. Just come here and let us know when you need any help. We are from all different time zones - so there is always someone here to listen - and give you an e-hug! (Ha ha - just made that up - and I know they are not as satisfying as having a cuppa with a real person - but better than nothing);)

    You have our full support - you are not alone. We all felt as you are! It is perfectly normal! It does get better!
     
  7. lauraqofu

    lauraqofu Approved members

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    I'm so sorry you have to be here. It's so scary, learning all you need to learn and being afraid that it'll never make sense.

    This board has saved my sanity in the last four months since my 10yo was diagnosed. The people here are amazing and it's so nice to talk to people who "get it" and have been where you are.

    I love my daughter's endo...he's awesome, but I find the answers here faster than calling him most of the time.

    It stinks that this board is necessary, but since it is, I'm glad you found it so quickly.
     
  8. PatriciaMidwest

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    Welcome and (((Hugs))). Sorry you have to be here, but CWD is a wonderful community that is here to help you on your journey.
     
  9. 4monkeez

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    long vent...sorry

    Thanks so much everyone, it is nice to hear there are others who get it out there...

    I realize my first post was sort of vague...I am just trying to take this all in, and it feels like since Matt appears to be "normal" and his blood sugars are not too high or too low by most standards, everyone is like "oh good it's over" and I am still feeling like I don't want to do this and like I just want to vommit (sorry) most of the day..or curl up in a ball in the dark and cry, but I can't because I have to give my son 5-6 injections a day and stick his little finger 8-10 times and not sleep due to 2 am readings and then laying awake worrying that he is too high or worse..too low..I am exaughsted and sad and angry and I feel alone and somewhat deserted, I don't want to answer the phone, because if I hear that Nick Jonas has diabetes and is so successful one more time I might throw thow the phone or scream or worse! I found my self angry at my poor husband today because he can escape to work for ten hours or cut the grass, etc while I am stuck here explaining to one six year old that he can't eat what he wants and making the other 6 year old feel like he has to hide to have juice box cuz his brother has diabetes...I feel like I am screwing up my whole family! I know it will get easier...but how long do I give myself and is it normal to feel so lost and alone and sad and angry and stressed and crazy?? Will we ever find a balance? Am I depressed?? This is about my little baby, why do I feel so awful, he's the one living it and he is doing better than me!!!

    Sorry for the vent, but that did feel good to say it all!!

    Tell me this gets easier!!??
     
  10. Luke's Mom

    Luke's Mom Approved members

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    This sounds oh so familiar - I was just there on 2/5/10 when my son was diagnosed ... It WILL GET EASIER .. All you can do is just take it one day at a time. The dieticians and nurse educators were so helpful during the first couple of monthes as we learned how to deal w/ this all.
    I never thought I would be saying this so soon, but it does get easier...

    Good Luck
     
  11. kiwiliz

    kiwiliz Approved members

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    VERY VERY NORMAL!:D You are completely justified feeling like this - and I can tell you - 5 years on - it does get easier! (And it doesn't take 5 years!):D
     
  12. KHM

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    It gets easier. You'll always have variations on the general theme of figuring out insulin and why weird things are going on but you'll have much more information about diabetes and your little boy, too. That will dramatically decrease the amount of time you spend in pursuit of understanding things and/or achieving targeted blood glucose levels.

    Every bit of this, every single bit of it, is exactly how I felt. After seven months, its still what I feel just to a lesser degree. Your son was diagnosed with diabetes but your whole family has to adjust and deal with it. And I think in most families there's invariably one parent who takes on the bigger share of management and it would be hard to imagine there never being any resentment about that. I hope your husband is resilient; mine is and I'm very thankful---I don't suffer in silence.

    So just so you don't feel you're in this alone I can tell you these things. I felt:
    scared -- for my daughter's health, for her life, for the complications that might occur decades from now. Scared of getting the insulin wrong and having huge hypoglycemic episodes.
    mad -- at the world for my daughter having diabetes; at the world for handing its management to me; at my husband for always sleeping all night long
    guilty -- for having not known sooner (she was very sick at dx), for being mad at my husband for doing the reasonable and sane thing, for grousing about my role in diabetes when my daughter needs it so badly, for not being able to take this all in stride so that my older daughters wouldn't catch so much of the fallout
    confused -- so much to learn so quickly, her bg was so slippery
    frustrated -- that the people in the periphery of our life expected her to be magically better and stay that way with insulin injections; that people who should have been supportive were anything but.
    depressed -- I had no other life for a very long time. No time away from Lindsay, to speak nothing about the loss of time with friends
    extreme exhaustion -- see above. I never slept. I sleep somewhat more now.
     
  13. KHM

    KHM Approved members

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    PS---so much of this experience with diabetes reminds me of a very scary health event involving my husband. He was in the hospital for months and for much of the time it wasn't at all clear that he'd survive. I remember calling my Mom (who lives far away) and saying: the doctors take care of Rob, I take care of Rob and coordinate the care of the kids but NO ONE is taking care of ME.

    I have felt that way through our introduction to life with diabetes. I knew to ask for someone to help care for me and my "needs" sooner. Please do find things that others can do for you...the grocery shopping, an occasional roasted chicken and salad dropped off at supper time. Very many people want to demonstrate their support...give them an opportunity to contribute in a really meaningful way.
     
  14. 4monkeez

    4monkeez Approved members

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    Thanks KMH... That is exactly how I feel...case in point here I am still awake at 3 in the morning, can't sleep because at 2 am Matt was 72...now I am worried even though after treating it he was up to 113...and everyone else is sleeping...how will I hold it together tomorrow ? I guess we just do....:eek:
     
  15. lauraqofu

    lauraqofu Approved members

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    Oh, I hate this. This is one of the least helpful things people say during those first few weeks when you're just learning how to deal with it. The other thing people said to me was..."Just be grateful that it's only diabetes."

    And I get what they're saying. I remember being in the children's PICU and seeing very sick kids with no hair walking around attached to their IV poles, and I was grateful that we got to leave the hospital, and grateful that she was going to be okay. But anyone who thinks I should be grateful to stick needles into my precious child 5 times a day is just so insensitive.

    You need to make sure to take some "Mommy" time. Even if it's just locking yourself in your bedroom for 10 minutes so you can cry.
     
  16. KHM

    KHM Approved members

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    72 at 2AM is a good reason to be awake or at least not sleeping deeply. I don't know what your strategy is but after spending alot of time trying to get nighttime bg "just right" our endo agreed that we should turn things around quickly even if it means overshooting the mark a bit....night time lows aren't good for anyone. Unless she's falling hard, we've found that four glucose tablets or one 15 g carb juice box will raise her blood sugar by about 100 in right around 30 minutes. See if you can get a feel for how much each rapid glucose source you use will raise his bg and then give him what he needs plus a little extra in case he falls a bit more before the glucose hits his system. Lindsay absorbs rather slowly (Celiac, I suppose); most kids show the increase in about 15 minutes.

    Here's an idea for getting through tomorrow---sleep when you can. I find I can count on a two-hour or so block of time after breakfast and lunch when Lindsay will just be working through her meal and insulin...little chance of going low. I have learned to use those times for napping, a quick get away for coffee with grown ups or just recently---an actual manicure! I'm also going to ask darling snoozing happily husband to pick whether he'd like to cook supper or do the grocery shopping tomorrow but I'm not doing both.

    Hang in there!
     
  17. annaluvspink

    annaluvspink Approved members

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    When my dd was diagnosed, she was 4 years old and I had a one year old toddler, too. I was deeply overwhelmed; with grief, sadness, despair, anger, frustration. I felt like I went from being this mom who could enjoy her daughters--play with them, craft with them, etc. to being a nurse--constantly causing pain by poking her ALL DAY LONG. At first, all I did was sit and observe her for 'lows'. It was awful. Soon, a very wise nurse told me to help dd learn to express when she felt 'low' and to praise her EVERY TIME she said that (even if she wasn't low). Now she is very good at communicating when she feels low.

    Also, a very wise nurse once told me that soon after my DD's diagnosis, this disease would weigh on my mind for 90-100% of the day/night. But that soon in time, it would dwindle down to an acceptable amount. This nurse was absolutely right. Now I go on diabetes 'binges' and read everything I can about it for about 2-3 weeks. Then I try to let it 'go' for a month or so. This is my coping mechanism. I also just let myself cry when I need to.

    Welcome to this board, you will find endless support and information here.

    I'm so sorry for your son's diagnosis.
     

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