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My 4 year old princess was DX on 6/20/2011...

Discussion in 'Parents of Children with Type 1' started by Daddy RRT, Jun 25, 2011.

  1. Daddy RRT

    Daddy RRT Approved members

    Jun 25, 2011
    ...and a piece of me died inside. My emotions are wearing me thin, and sleep has been elusive at best. It's just such a game changer, I've yet to come to terms with the scope of it all. I guess it's been getting a bit better every day, I still feel overwhelmed. No one ever mentions the financial implications of having a child with chronic disease. We've been home since Wed. evening, and it's been going OK. We've been speaking to the Endo Clinic twice daily, and the Endocrinologist a couple times as well. I'm not intimidated by the day to day clinical management of the disease......but moreso by the big picture stuff.
  2. Christopher

    Christopher Approved members

    Nov 20, 2007
    Welcome but sorry you have to be here. The feelings you are having are very normal. Over time your feelings will change and you will get more comfortable managing this illness. 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.

    Think Like a Pancreas: A Practical Guide to Managing Diabetes with Insulin
    by Gary Scheiner, Barry Goldstein

    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.

    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,

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


    Hang in there :cwds:
  3. Alex's Dad

    Alex's Dad Approved members

    Jan 11, 2010
    Hi welcome to the forum sorry you have to be here ,my princess was dxd a 20th also but in 2009 :eek:, I like your positive attitude about the clinical management keep it that way, don't dwell on the future this is a day by day fight and its tough in the beginning but it will get better.Good luck. :cwds:
  4. denise3099

    denise3099 Approved members

    Jul 31, 2009
    You know what I like to do? I liketo read adult blogs by former CWDs who are now adults with D. I like to see them living their great big lives and being happy and taking care of themselves. I like to think about my own beautiful daughter being a beautiful grown up woman doign her thing.

    That helps with the big picture.

    Read Kerri's blog, Six Until Me, for a start. You'll feel better. :)
  5. monkeyschool

    monkeyschool Approved members

    Mar 2, 2011
    Hi . Welcome to the board, and very sorry you have to be here. My 12yo DD was dx on 2/26. The first month is very hard, but it does get a little better with some time....at least it stops being the 'only thing you think about. We settled into a routine, and for the most part, have been able to work around diabetes for everything we were doing before (dance, tumbling, karate, etc) without much difficulty. I don't think we'll ever know what the future holds for our individual children, but I think as we are doing it each day we start to see what what we thought they may not be able to do because of diabetes they still can if we can manage it properly. Someone posted on another thread a study about life expectancy....it is great to see that our kids can lead healthy, long, and productive lives with the type of care we can get them today.

    Hugs...hang in there!

  6. Hayden'sMom

    Hayden'sMom Approved members

    Oct 26, 2010
    Sorry to hear about your daughter... we have been at this since Oct'10. It does get easier... I promise... this site is a life saver in so many ways... glad you found us here!
  7. valerie k

    valerie k Approved members

    Feb 19, 2008
    just breathe daddy. Its gonna get better every day. been 5 years now for us. Coming to terms takes time. You will run a million different emotions, let them roll. You will be angry, sad, frustrated, tired (very tired) Its perfectly natural to "mourn" what you feel you have lost since diagnosis. Dreams you had that you now dont know if they can come true for your DD. (hey, just becouse we also dream it, doenst mean they will let them come true for us anyways ;) )

    and expenses... yes, many. overwelming at times. Many of us just have the attitude now of it is what it is. Not like we can do without... so, yes, expensive.

    Im sorry to hear of diagnosis, but welcome to our little family here at CWD. :D
  8. Beach bum

    Beach bum Approved members

    Nov 17, 2005
    Hi and welcome, my daughter was diagnosed 6 years ago June, right after her 4th birthday. Today she is shipping off to diabetes camp for the week:D

    Don't come to terms with this yet, let yourself mourn, there has been a major life changing event in your child's life. Each day will get a little better, you may even find that counseling will help, it did for me. You may think that your life isn't normal anymore, but we saw it as a new kind of normal for us.

    You can search the archives here because the financial implications comes up frequently. Insurance changes, lack of insurance, loss of jobs. How to maximize the amount of supplies for the money. The one thing you will find here is that you are not on this journey alone. You have a bunch of great people in the boat with you to help you steer. Don't hesitate to ask questions, that's how I got some of my best info.

    You are not alone. Hang in there:cwds:
  9. cm4kelly

    cm4kelly Approved members

    Apr 28, 2011
    My son is 4 too

    My son is 4 years old and was diagnosed on 11/12/09 at 2 1/2. This is a great board for information and questions - no matter how small.

    We have a wonderful endo, but they don't live with a four year old!

    My son ate non-stop after diagnosis - they said his body had been in starvation mode. I was mostly stressed out about that. I also found out that in small kids some food that they proclaimed as "FREE", weren't free for my child. Even small amounts of carbs can have an impact on the little ones.

    You will also find other foods that raise your child's blood sugar quickly - mine is yogurt - even low sugar.

    Good luck as you begin your journey. Private MEssage me if you need to ask something.
  10. MamaTuTu

    MamaTuTu Approved members

    Apr 1, 2011
    My DD was dx in March. She is now 21 mo old and some days are still really hard for me, but you found a great place to come. You will find that the people on this forum are your new friends and even if and when you dont understand yourself (the issue I have been having lately) that others will or at least try. Try to keep your head up. (((hugs to you and your family)))
  11. spamid

    spamid Approved members

    Jul 11, 2006
    Just wanted to add my welcome, and sorry that you have to join us. Let yourself grieve, cry, rant, whatever you need initially. It is overwhelming, and the financial part can be daunting. This is the best place for support, encouragement, and advice, so come back often! We have been doing this for almost 6 yrs now, and you will become an expert on your daughter.

  12. DsMom

    DsMom Approved members

    Nov 9, 2010
    I am so sorry about your daughter's dx, but you have come to the right place. My son was 4 at dx as well...he is now a happy, active 7 year old...getting into trouble, swimming the days away, and having a fun summer. D is a sometime annoyance to him that definitely does NOT define his days or who he is. It is part of our daily life, like taking baths, brushing teeth, washing hands...it's something he has to do to take care of himself and stay healthy. To be honest, he complains a WHOLE lot about brushing his teeth:rolleyes:...but holds out his finger for BG checks without a thought or word.

    You will have a mourning period...so don't be hard on yourself or expect to adjust right away. But your family WILL adjust in time...which you will see by those in this forum. Life will be "normal" again...and your daughter will be happy and do all the things you planned for her before her dx. My adult niece was dx at 2 years old...she is now married, has traveled the world, has 2 sweet, healthy kids, and is healthy and complication-free. My other niece with D competes in triathalons and is MUCH healthier than I am!:eek:

    The "big picture" of D can be overwhelming...try to focus on mastering the day-to-day stuff...which is the best way to manage the "big picture."

    Mostly, stay positive and matter-of-fact for your daughter's sake. When we brought Daniel home from the hospital, we didn't have any kind of big discussion with him about "You have diabetes now and this is what we have to do...." We just let him know things a little at a time..."We need to do this to keep you healthy" his insulin was just "medicine" for a while to him. He has slowly learned more about D...but even now does not know the "big picture." Plenty of time to learn that...and he is still way too young.

    Search out stories about happy, healthy and successful adults with D...and you will begin to understand what living with D is really like. It is not the end of the world for your daughter or you...but it is the beginning of living in the world a different way.

    Stay strong, hang in there...you will learn the ropes...and you will all eventually be happy again!:cwds: All of us here are living proof!
  13. Daddy RRT

    Daddy RRT Approved members

    Jun 25, 2011
    Thank you all for the words of encouragement.

    I have a hard time at night, after tucking her in.....it's easy to unravel. But I really can't believe how much it helped just reading some of the posts here! You guys hit the nail on the head about the mourning part, thats been hitting me especially hard. The day prior to her Dx was Fathers Day..we had a great day at a lake catching tadpoles and picnic etc. She put up such a tough fight the whole day.......we previously noticed the frequent urination and had an appt. the next day. Later that evening we were in the backyard around the firepit and she was not herself at all.....my wife and I became more concerned. The next afternoon at the Pedi's office she was spilling ketones and had a BG of 650. It just rips my heart out to know she was in DKA the whole time and still trying to give me such a great Fathers Day. In retrospect, all the signs were there, it couldn't have been any clearer. I don't know how I missed it. I guess the good news is that she's gained almost 4lbs since Mon. We meet with the Endocrinologist on Tues. We havent met her yet, but spoken by phone twice.

    Thanks again....
  14. valerie k

    valerie k Approved members

    Feb 19, 2008
    hon, my son looked like a walking skeleton when he was diagnoses... with a blood sugar in the 1000s, and we so totally missed it. we thought he had the flu. when the dr did the first blood glucose in the ER, it just said HIGH. I said, he just drank a code red mt dew in the waiting room (it was all he would drink) and well.... we missed all the signs, the frequent bathroom trips, the exsessive drinking, and the sugarry bathroom toilet seat. (people with boys understand this one perfectly ;) ) my best advice, dont dwell on what you feel you should have done, there is gonna be alot of that coming, think of the positive of all that you can successfully and will sucessfully do in the future. We as parents do all we can always to try and raise our kids the best we can. Life tosses loops. We faulter, we pick up, dust our knees off and keep trudging.
  15. bnmom

    bnmom Approved members

    Oct 26, 2010
    Hi, sorry you are here - but welcome :cwds:

    We are still in our 1st year of D and I can tell you I'm still grieving...but it is a lot better already. The first couple months are just overwhelming across the board - the worry, the grief, learning management. But it gets easier.

    And its hard not to beat yourself up, but that's just part of being a parent. I missed all the signs (I didn't know what they were signs of) and I only finally took Bobby to the pediatrician after a few days of him throwing up - because I wanted the ped's advice on this 'stomach bug' my son had. We were sent directly to the ER and spent days in the hospital fighting his DKA.

    Having your baby hit with this is a real kick in the gut. But the most important part is that everything will be okay. And your little princess will be just great. This is life now - but this won't stop her from doing anything and everything she wants...it just take a little more planning now.

    Please don't feel alone. Every single thing you are feeling right now is normal - and everyone here understands.
  16. OSUMom

    OSUMom Approved members

    Sep 10, 2006
    I'm so sorry for your daughter's diagnosis. It's a shocker for sure and overwhelming in the beginning. I don't often respond to new people posting, but I really wanted to respond to your thread because my son was diagnosed on June 20 also, but it was 5 years ago in 2006. He's 23 yrs old now and has begun his career after college. I just want to say although it's a shift in what was normal for your daughter and family - it doesn't have to be a game changer for your daughter. Although my son carries a meter, test strips, and wears an insulin pump, he hasn't changed who he is and what he's going to do the rest of his life because of type 1 diabetes. Wishing you well in this transition. I know it's an emotional and physically-trying time. :cwds::cwds:

  17. kgerrick

    kgerrick Approved members

    May 29, 2011
    Hi, so sorry to hear about your daughter. It is a life changer. I am new to this also, my daughter was dx'd on 5/19/11. That day was surreal. The first week was very tough. On the 3rd day my husband told me that I was sobbing in my sleep. I was also waking up and crying, it felt like I was drowning. Then the very next weekend after her diagnosis my 22 year old son had a bad accident while riding his bmx bike doing jumps. While he was landing a jump the bike hit the ground and bounced up and the seat hit him in the pernium area. It severed his urethra. He had a suprapubic catheter put in and he now has to wait 3-5 months then the urologist surgeon will do surgery to sew the urethra back together. That week was then spent mourning both of them.

    I found this site on the night of diagnosis while we were in the hospital and it has been a real big help. The people on here are great. They have helped me by just listening and supporting me. I come on here for a few minutes everyday. I have received some very positive advise. I am coming to realize that it is getting easier. I can't stress enough that you must take it step by step. One thing positive that has come out of this it that it forces you to look at what is truly important. It forces you to live in the moment. Yes it is overwhelming at first but I can tell you that it will get better. You will settle into a new normal. Come on this site and read to educate yourself.

    Take it easy on yourself!
  18. Becky Stevens mom

    Becky Stevens mom Approved members

    Oct 14, 2008
    Hello and welcome:cwds: Your daughter sounds like such a little sweetie:cwds: Please dont feel bad about missing the signs of type 1. Many, many people do and some children become very ill :( I so wish that doctors could give out just a little info about type 1 to parents at well child visits.

    I bet she is feeling lots better now isnt she? I remember how sickly and tired my son was right before he was diagnosed and how he perked up and became a different person after being on insulin for awhile. I know your feelings are raw right now and that you are afraid. That is normal, we love our children with all that we are and want them to be well and healthy. She will be well and healthy now, she can do anything she wants in life, just add insulin and watch her go! Please tell your wife that we would be most happy if she ever wants to join this group also, in her own time though:cwds:
  19. 2type1s

    2type1s Approved members

    Nov 23, 2008
    So sorry to welcome you to the forum! It's definitely heart-wrenching. My oldest was also dx'd at 4, on July 20th, almost 12 years ago....seems like a lifetime ago. She is like any other teenager, driving, goes on school trips, has a job, has wonderful friends, loves to cook, sing and exercise. She also has type 1. MOST days are good days!!! My youngest was dx'd 3 years ago at age 8. Let me tell you, that is the saddest and angriest I've ever been. Even with 2 kids with D, it doesn't take over our lives. Yes, we have more on our plate, and yes, I'm sleep deprived, but the girls are really wonderful and don't let it stop them. Zoe had a rough go of it 1 week ago and ended up in the hospital in DKA due to a virus, bad pump site, fever and vomiting. She was so very sick and I was terrified, but a few days later, it's like it never happened. The kids are more resilient that we are for sure! This is a wonderful place for support for those of us who need it......even when we've been at it for years
    : )
  20. azdrews

    azdrews Approved members

    Sep 16, 2010
    Welcome to CWD...although it's a sucky reason you have to be here.

    My son was diagnosed almost a year ago at 4 years old. I can tell you that the first year is rough...there are highs and lows (quite literally!) so give yourselves a lot of time to adjust, to accept and to learn. I am still learning every single day, which is frustrating for me....I wanted to know how to do everything IMMEDIATELY and know how to do it the right way. I just isn't possible...and I wish I had just let myself grieve a little more. I find that even a year later, I am still mourning for what our life was like last summer. This summer is a different ball game.

    But...your daughter will shine. She will be brave, amazing and be able to handle things you never thought she could. My little guy amazes me every day with his strength. Hang in there....we're all here for you!

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