- advertisement -

Overwhelmed and Under-educated

Discussion in 'Parents of Children with Type 1' started by mmilam5852, Oct 12, 2014.

  1. mmilam5852

    mmilam5852 New Member

    Joined:
    Oct 12, 2014
    Messages:
    4
    Nearly a year into my sons diagnosis and I still feel like I don't know ANYTHING. It seems like each doctor just wants to get us in and out as quickly as possible, and seems to think we know everything already! The education courses we were SUPPOSED to take, got squished into a 20 minute talk with a dietitian and nurse. I feel like I am completely alone in all this and feel like I am failing my son. My biggest issue, is not knowing WHAT to ask when I finally get the chance to.. I just need someone to sit me down and talk to me like I've never heard of Type 1 diabetes. I need to be drawn a picture like a child!
    Bottom line, I need HELP. PLEASE.
     
  2. nebby3

    nebby3 Approved members

    Joined:
    Jun 5, 2007
    Messages:
    923
    You've come to the right place. Many of us here would say we've learned most of what we know right here, not from our doctors and nurses. Spend some time just reading posts and soaking it all in. Do you have specific questions or concerns? How old is you child and what kind of insulin are they on? Any info you can provide can help us know where to start.
     
  3. valerie k

    valerie k Approved members

    Joined:
    Feb 19, 2008
    Messages:
    1,510
  4. caspi

    caspi Approved members

    Joined:
    Oct 11, 2006
    Messages:
    5,134
    Welcome! Here are some great books to get you started.

    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


    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
     
  5. sszyszkiewicz

    sszyszkiewicz Approved members

    Joined:
    Dec 24, 2013
    Messages:
    842
    Hey check the notifications up top. i will send you my Pink Panther book "understanding Diabetes" no charge as long as you send it onto another parent once you are done with it. For beginners it is terrific, but once you have been through it and have the basics the book sort of collects dust.
     
  6. mmilam5852

    mmilam5852 New Member

    Joined:
    Oct 12, 2014
    Messages:
    4
    I don't really know WHAT to ask.. I feel like I am missing SO much information that I can't even start to question. I understand diabetes and what it does ect... But as far as care, when to worry, and anything else, I am at a loss.
    My son is 3 1/2 years old, he takes Novolog and Levemir for his insulin. We are only 4 days shy of his one year mark for his diagnosis.
     
  7. mmilam5852

    mmilam5852 New Member

    Joined:
    Oct 12, 2014
    Messages:
    4
    Read and replied!!
     
  8. Lori_Gaines

    Lori_Gaines Approved members

    Joined:
    Jul 10, 2013
    Messages:
    209
    I am almost two years into this and am just now feeling a little better. And we have the best endo team at Stanford University, so I cannot imagine how I would have felt without that! Hang in there. It actually does get better. It never gets good, but it does get better. And get the Pink Panther book! We were given it when she was admitted to Stanford PICU, and it is great. Sending hugs your way!
     
  9. rgcainmd

    rgcainmd Approved members

    Joined:
    Feb 6, 2014
    Messages:
    1,377
    I'd like to second the recommendation that you read Think Like a Pancreas by Gary Scheiner after the Pink Panther book. IMO, it covers everything you'd ever need to know about T1D.
     
  10. mmilam5852

    mmilam5852 New Member

    Joined:
    Oct 12, 2014
    Messages:
    4
    Thank you for your support. I really hope things start in the right direction soon..
     
  11. rgcainmd

    rgcainmd Approved members

    Joined:
    Feb 6, 2014
    Messages:
    1,377
    In addition to all of the excellent suggestions above, you may want to consider asking your endo if you could meet with the CDE for a one-on-one "refresher" course. Or find out if they offer any group courses. I know that one hospital-based endocrinology group I was considering switching to offers a series of courses on different topics such as diabetes basics, pumping basics, exercise and type 1, etc. The bottom line, however, is what everyone has been saying, and what I have learned to be true: for better or worse, your endo is a very limited source of info and support. Most of what you need to know will be acquired by reading the books suggested and asking questions on this Forum.
     
  12. dayanne

    dayanne New Member

    Joined:
    Nov 6, 2013
    Messages:
    4
    My son is coming on a year also. I feel you. Things seem really out of control these days. It's terrible as a mother to feel like your failing. Your not, it's the nature of the diabetes. How can we control it when their bodies are going through so many changes! All we can do is be there and try. I'm going to check out this pink panther book that I keep hearing about. I still have bad days where I beat myself up but that doesn't really help much. I always write down my questions as they come up that way when we see the doc I'm prepared. Don't be too hard on yourself!
     
  13. Sarah Maddie's Mom

    Sarah Maddie's Mom Approved members

    Joined:
    Sep 23, 2007
    Messages:
    12,521
    Why don't you just jump in and ask any question that is on your mind? There really are no dumb questions. Just ask - people will help - we've all been there.
     
  14. Annapolis Mom

    Annapolis Mom Approved members

    Joined:
    Dec 15, 2008
    Messages:
    199
    When my daughter was first diagnosed I read the Pink Panther book over and over until I finally understood it.
     
  15. dpr

    dpr Approved members

    Joined:
    Dec 17, 2013
    Messages:
    399
    Ditto on this. Start with whatever your having a problem with at the moment.

    Please don't ever feel like there is something you "should" know and are too embarrassed to ask. The first year is REALLY tough and second while easier is no cake walk. Ask anything you need to. We're all here to help and support each other and that means you too!

    Do you have a Diabetes Family Camp in your area? A weekend at camp can be great in so many ways for the whole family. We always get a lot out of it an have one coming up in a couple weeks.
     
  16. momof2greatkids

    momof2greatkids Approved members

    Joined:
    Jan 4, 2011
    Messages:
    256
    Are you in the Kansas City area? If so, I could help you find a good doctor, CDE, dietician. My daughter goes to Children's Mercy.
     
  17. 3kidlets

    3kidlets Approved members

    Joined:
    Aug 3, 2010
    Messages:
    819
    Pink Panther was a valuable resource right after diagnosis. About a year in to my daughters dx, I read Think Like a Pancreas and it really helped me fine tune everything. I highly recommend it.
     
  18. missmakaliasmomma

    missmakaliasmomma Approved members

    Joined:
    May 31, 2013
    Messages:
    846
    This forum is what taught me most of what drs couldn't/wouldn't. I felt very similar to you for a couple years. Doctor wouldn't listen to me, made me feel like I was going to kill my child, but wouldn't tell me how to fix anything. We switched drs the same month we heard that a new one entered the area, and along with this forum, it's been a game changer.
     
  19. TripleThreat

    TripleThreat Approved members

    Joined:
    Oct 31, 2007
    Messages:
    1,785
    Talk to your local
    Jdrf try to get to know someone who's been at it for awhile, I've been called to do this a few times and have made great friends
     

Share This Page

- advertisement -

  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.
    Dismiss Notice