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Newly diagnosed daughter

Discussion in 'Introductions' started by skyleysmom, Apr 17, 2009.

  1. skyleysmom

    skyleysmom Approved members

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    Hi,

    My daughter Riley was diagnosed with type 1 diabetes on March 18. She was diagnosed with juvenile rheumatoid arthritis when she was 4 but has been in remission for about 3 years. She is now 11. I found the most amazing forum of support for her JRA before she was even diagnosed (she was pre-diagnosed online by Dr. Mom) and although I searched, sadly did not find this forum when I so desperately needed it a month ago. I was looking in the wrong place. We are learning how to deal with this new life and lucky for you people I am not crying every night anymore :) but I still find myself in tears more often than not, and I definitely still need advice and support. I have so many questions still and I am no longer able to bug the nurses at my will as I was taken off the new patient pager service after 2 weeks (I think they were getting sick of me!). I am so sad and worried, angry too. Okay, now I'm getting emotional so I'd better sign off.

    Ellie
    Riley's mom type 1 diabetes & polyarticular jra
     
  2. candise

    candise Approved members

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    Welcome- so sorry you have to be here. My daughter is 11 as well and was diagnosed in Feb of this year. I think it is totally normal to be emotional and upset by your daughters diagnosis. This is a great community of people who have felt the same as you. If you have questions post in the parents forum and you will be amazed at the wealth of information offered. For now take it one day at a time as you and your daughter adjust to your new normal. Remember this is a marathon and not a sprint- so don't get to overwhelmed by everything.
     
  3. 2type1s

    2type1s Approved members

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    Welcome.....It's a sad club to come to, but I'm so glad to have found it myself. I have 2 daughters with type 1, and one who also has autoimmune thyroid disease, and I have found this website to be a saving grace. I may PM you soon to see if you can point me in the right direction. My younger D has been showing signs of JRA (or something like it) for 7 months. It has been maddening and exhausting. We are going to the rhuematologist in a month.....finally.
     
  4. HBMom

    HBMom Approved members

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    We are in SoCal too - there is a support group that has been organized through the ADA (most events around Long Beach) and there is a diabetes expo in Long Beach next weekend - April 25th. PM me if you want additional information.
     
  5. 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:

    The "bible" of childhood diabetes, "Understanding Diabetes" (aka The Pink Panther book) by Dr. Peter Chase of the Barbara Davis Center at the University of Colorado.
    http://www.uchsc.edu/misc/diabetes/books/ud11/ud11.html

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

    Sweet Kids: How to Balance Diabetes Control & Good Nutrition with Family Peace, Second Edition by Betty Page Brackenridge, MS, RD, CDE & Richard R. Rubin, PhD, CDE. Published by the American Diabetes Association, 2002. 250 pages. Softcover. US$16.95.

    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, 2005. ISBN 1-56924-396-4. US$34.95.

    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.com/showthread.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:
     
  6. mommyof5

    mommyof5 Approved members

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    Welcome! My Daughter was diagnosed a year ago at 12. I went through and still go through a lot of those emotions too. It has been a hard year for us. The good news is it will start to feel better. I told Kaley the day before her D day anniversary that a year ago had been our last "normal" day. In a way that is true. Now we just have a NEW "normal". This place is great and has tons of info and people who are more than willing to help you out.
     
  7. tiffanie1717

    tiffanie1717 Approved members

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    Welcome to CWD!! It's a wonderful place of support and acceptance. Ask your questions here - someone will always take the time to share their experiences! Sorry you've had such a rough time, but glad you found us!
     
  8. skyleysmom

    skyleysmom Approved members

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    Sharon- It sounds like you have a lot on your plate. JRA can be difficult to diagnose. I hope you end up figuring it out soon and find a great pediatric rheumatologist if you find that you need one. Feel free to PM me any time. There is a great JRA support group at yahoo groups called the jra-list. I joined before my child was diagnosed and they helped me with so much. Knowing what questions to ask etc. I really recommend that you check them out. They are kind and helpful. I would have crumbled without the support that I found there.

    Caryn- Thanks for the support group info I will definitely check it out. Where in So Cal do you live? I am in the Sherman Oaks area of the San Fernando Valley.

    Chris- Thanks for the tips on books. I will order the pink panther book immediately!

    Candise, Mommyof5 and Tiffanie- Thank you for the warm welcome!

    I have so many questions. I guess I will seek out the parents forum and ask some...

    Ellie
    Mom to
    Riley 11 type 1 diabetes & polyarticular JRA
    Skyler 15
     
    Last edited: Apr 19, 2009
  9. debbiefran

    debbiefran Approved members

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    Hi Elli,

    Welcome to the group.. I am a new member as well.. My five year old was diagnosed back in sept 2008 and i have had cried many tears.... How is your daughter doing?
    How is she adjusting to everything?

    Hope to hear from you soon?

    Debbie
     
  10. debbiefran

    debbiefran Approved members

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    Apr 19, 2009
    Messages:
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    Hi Elli,

    Welcome to the group.. I am a new member as well.. My five year old was diagnosed back in sept 2008 and i have had cried many tears.... How is your daughter doing?
    How is she adjusting to everything?

    Hope to hear from you soon.
    Debbie
     
  11. Kalebsmom

    Kalebsmom Approved members

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    Welcome aboard. I also have an 11 yr old daughter named Riley ( non-d ). I am sorry you had to find this forum, but you have found a wonderful place for support.
     
  12. allisa

    allisa Approved members

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    Welcome to the site....you are lucky to have found it this quickly....I didn't make it over until a couple of years after dx...luckily....there was a pretty good support group in my town.....anyways.....

    Ask all the questions you can and I had to comment on this :


    My first thought was phoeey on a doctor/nurse who discourages your questions !! A GOOD endo team will hold your hand and answer and re-answer all your questions.....it never hurts to look around for different docs.....most of new dx's are referred to whoever their peditrician sends them to, or whoever the hospital sends them to....but.....you aren't married to this doc....feel free to look around and find an office that will be open, receptive and welcoming !!
     
  13. Eve

    Eve Approved members

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    Feb 14, 2009
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    Welcome to CWD. Sorry you have to be here.:( The parent chat room is a good place to talk with others who understand what you are going through. The support on this site is amazing! Take care!:)((hugs))
     

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