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What is the 1 thing you wish you knew at DX?

Discussion in 'Parents of Children with Type 1' started by Mike&Dans.Mom, Oct 6, 2010.

  1. Heather(CA)

    Heather(CA) Approved members

    Jun 18, 2007
    Good one! Definitely a scale! Salters are the best but a cheap one will work too, I have been using a $35 dollar mail scale since Seth was dx'd over 7 years ago :) It's great for measuring grams of cereal, then turn it off and on and pour in 8oz of milk. It also great for baked potatoes, fruit, juice for lows if you have a big bottle...I personally don't like it for pasta or rice.
  2. 5kids4me

    5kids4me Approved members

    Sep 28, 2010
    I really need to get one of these scales. I haven't baked since Josh dx but I have been concerned about the holidays quickly approaching-The kids expect me to slave in the kitchen;) In reality I love to bake and miss it terribly.
  3. suz

    suz Approved members

    Feb 9, 2010
    The Salter Scale was a big splurge for me, but I use it multiple times a day and couldn't imagine life without it now. It's definitely a 'must have' in our house!
  4. Ivan's Mum

    Ivan's Mum Approved members

    Aug 29, 2006
    1-carb counting (took a year before we learnt that)
    2-it's not a one size all fits diseases - you kid is different from mine
    3-get a network of other families (don't rely on the hospitals word as law!)
    4-trust your gut
  5. Karenwith4

    Karenwith4 Approved members

    Dec 2, 2007
    I wish I had known what a difference our naturopath would make to management and to helping Em really understand what was happening in her body.
  6. cedelmon

    cedelmon Approved members

    Jun 8, 2010
    Still a newbie, but honestly, I can say I can't have wished for anything different outside of finding out that the diagnosis was wrong :).

    We ended up at Dallas Childrens. They had a program that taught us what we needed to know when we needed it and could honestly absorb the information. Not saying we absorbed everything or that we did everything right, but all things considered, they have been absolutely awesome.

    They told us about scales, carb counting, the nurses/doctors worked with us on her bg, injections and when they saw looks of shear panic/information overload took over and helped us out. I stayed overnights and the nurses told me to go back to sleep (not that I could) when they were doing stuff in the middle of the night because they knew what we were in for in the long run.

    They told us about YDMV, but didn't use the term, took me awhile to figure out what that meant on here, lol. And best of all they gave us a number to call for questions, concerns, fears, whatever. I still remember being in tears on the phone telling the oncall doctor that she was going low constantly and the doctor telling me to adjust her numbers and my response was to tell the doctor that we were told we couldn't adjust her insulin without a doctors approval. This was followed by a long pause and the doctor saying (with strained patience understandably) that she was a doctor and she was requesting the change so it would be ok.

    I can honestly not say enough about how great Childrens was during the whole process. They told us about CWD, but it took me a bit to actually get on here.

    Oh, not that this is the right post, but we had Sierra's second ever Endo appointment yesterday and her A1C was 6.9. Thought for sure it would be higher due to a week of bronchitis, pink eye with highs all over the place.
  7. Kaykay

    Kaykay Approved members

    Nov 13, 2005
    I wish we would have known that some lancers hurt less than others, and you don't have to use the one that came with your meter. (We much prefer the AccuChek SoftClix.)

    I wish we would have known that life would at some point feel normal again - not the old normal, but you definitely do find a "new" normal.

    I wish I'd have know that Press'n Seal works great to cover numbing cream (although I'm not sure they even made it then).
  8. FloridaMom

    FloridaMom Approved members

    Sep 26, 2010
    Thanks to all for the scale info! Going to check it out on eBay right now.
  9. simom

    simom Approved members

    Jun 2, 2008
    That the day would come when having an apple donut at the orchard would merely be the subject of a brief "what do you think" exchange between hubby and I - and not a panic inducing ordeal.
    I remember sitting in the hospital (also 8 months pregnant - so yeah, the hormones weren't helping) and thinking "how will we ever go to the apple orchard?!"

    Of course, the apple orchard was just a symbol for all the special "food centered" events that come through life - birthdays, holidays, vacations. I wish someone had not just said "they can eat anything as long as you give them insulin for it" and had instead said "you will get to the point where you feel confident letting them eat special treats and knowing how to dose for them."
  10. jcanolson

    jcanolson Approved members

    Apr 7, 2008
    You took the words right out of my mouth! I thought I was a complete failure for the first few months.
  11. Lee

    Lee Approved members

    Oct 5, 2006
    I wish I would have known that you can expect BS to only be in range 50% - 75% of the time...

    Ok, our endo told us that - but I wish I would have believed him!

    (Scales - we have a salter and I love it - but before salter, we had a cheapy $5 from Wal MArt and I loved that to! Weighing is just more accurate then measuring cups!

    And recipes - I finally learned about AllRecipes - which has the nutritional break down - and I would look up a similar recipe and write the carbs per serving IN the cookbook!)
  12. KHM

    KHM Approved members

    Mar 24, 2010

    My endo didn't tell me that. And it took me a while to accept after I knew it and had it validated by my endo. (you have no idea the havoc it wreaked for my regression models... :rolleyes:. Only half-kidding).
  13. tiger7lady

    tiger7lady Approved members

    Sep 14, 2010
    I wish they would have told me that just when you think you have everything figured out something goes wonky.

    I wish they would have told me that even people who have been dealing with this years and years have issues at times.
  14. 22jules

    22jules Approved members

    May 17, 2008
    I wish I was told that you can never CONTROL diabetes--the best you can do is MANAGE it. I had a hard time with this since I tend to be a bit of a control freak:p
  15. lauraqofu

    lauraqofu Approved members

    Apr 19, 2010
    I have to say I feel so relieved that I found this site at diagnosis. Actually I found this site before diagnosis. I had googled Cass's symptoms and this site came up, but it was also in the million pages of information they gave us in the hospital.

    I definitely think every parent dealing with a new diagnosis should be given info on this site. It's saved my sanity over the the last six months. I can't imagine all those parents out there that are dealing with diagnosis and don't know that this community exists. It breaks my heart just thinking about it.
  16. PrimAdonna

    PrimAdonna Approved members

    Sep 4, 2010
    Found the Salter 1450 for $63 (free shipping) from Old Will Knot Scales. Anyone bought from them before?

    Old Will Knot Scales
  17. Sarah Maddie's Mom

    Sarah Maddie's Mom Approved members

    Sep 23, 2007
    That she'd be happy. That D wouldn't shatter her childhood. :cwds:

    Cause it hasn't even come close.
    Last edited: Oct 7, 2010
  18. Amy C.

    Amy C. Approved members

    Oct 22, 2005
    YES!! My son was on 70/30 and then NPH and regular. He felt so much better when he got off NPH. He was on Lantus the month it was released to the US market in 2001.
    Last edited: Oct 7, 2010
  19. pianoplayer4

    pianoplayer4 Approved members

    Feb 13, 2010
    I wish they had programs at hospitals where newly dx family's could meet other families while they were still at the hospital. like volenteer once a month or something. we still have yet to meet another typ 1 in person and it would have been nice to see someone alive with type 1 at dx
  20. KellyMama

    KellyMama Approved members

    Sep 16, 2008
    Agreed. It took a while before I realized this was just going to be another bump in the road but it wasn't going to take over our lives. Not to make light of things - but it wasn't the end of our collective happiness like I feared on "D" day.

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