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10 Things Your Endo Never Told You.

Discussion in 'Parents of Children with Type 1' started by Christopher, Jan 4, 2012.

  1. MomofSweetOne

    MomofSweetOne Approved members

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    To call and cancel before the 24 hour notification policy in the event of a blizzard forecast because "the policy is the same as any other day". I don't consider a routine endo visit worth going out on roads dangerous enough for travel advisories!
     
  2. LoveMyHounds

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  3. beccalecca1

    beccalecca1 New Member

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    I just wanted to point out that I am a member of the "penleakophobes" group. My 3 year old was in the ICU when they introduced me to the Novopen (when she was first diagnosed). We used it for a whole day before we found out the darn thing was leaking and causing their blood glucose meter to read high, causing lab to come draw her to find out she was over 600. Sorry, but I refused to use it and will refuse to use it on her ever because at 3 years old (she's 4 now) a unit or a half of a unit makes a large difference in her sugars. I know it's OT, but just took some offense to the comment.
     
  4. MilesForMiles

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    The hardest question to answer: "Yes, but how are YOU doing?" It's hard for me to answer that one honestly without crying.:(
     
  5. MelodyKH

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    Milesformiles

    Your post made me cry! Hang in there! Everyday I tell myself that there is tremendous hope for our kiddos these days, maybe my DD will see a cure, certainly a closed loop system, and the best we can do is the best we can do.

    Take a break once in a while if you can., even just an afternoon off from being a pancreas can make a big diference.

    I know your kids are little so you probably get no sleep, try to rest when they do, and find something to laugh at every day.

    Best thoughts!
     
  6. greenpalm

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    Thank you for this, although, if you really intend this info for newbies, explaining your abbreviations would be helpful.

    I'm confused by much of what you said. I'll figure it out eventually, but it's like a scavenger hunt this way.
     
  7. LoveMyHounds

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    I just went to see my dr (asthma out of control again :rolleyes:).
    She asks: "do you sleep well?". "No" I answer. "I wake up every 2 hours to check my diabetic daughter". And then I start to cry. And cannot stop! I swear, it surprised even me!
     
  8. Amy C.

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    This is a sticky of the explanation of many of the abbreviations used on this site: http://forums.childrenwithdiabetes.com/showthread.php?t=9804
     
  9. sooz

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    (((huggss))) Try to take care of yourself too....I know how hard it must be.
     
  10. greenpalm

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    Yeah, me too :-( my rheumatologist wanted to start me on something this week, new for my arthritis pain. The nurse said, it'll also help you sleep. Then I explained, I can't be excessively drowsy, I have to check on my daughter. They said, "oh no, you can't be taking this then."

    Just one more example of how it has changed everything.
     
  11. skyblufig

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    What they didn't say out loud, but was written all over their faces when our ds was diagnosed: that being 10 weeks pregnant & having a newly diagnosed toddler is the worst possible timing. Ever. I've got 10 weeks left now before his little brother joins us and will not have one solid night of sleep under my belt since November of last year. :eek:

    Also, that you will never look so fondly at an internal organ as you now do at a healthy pancreas! :p
     
  12. Anyelday

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    I was 32 weeks pregnant when my daughter was DX'd...was so happy I at least had those few weeks to figure things out. I had 6 weeks of sleep between my son night weaning and my daughter's diagnosis. The last time i had slept through the night was sometime in 2008..I will always look back on those weeks fondly. :)
     
  13. T-bird

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    This is totally a necropost but I had both of these symptoms for months after diagnosis and multiple endos were mystified.:rolleyes: Mystery solved! :)
     
  14. nebby3

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    I was 37 wks pregnant when dd, age 19 months, was dx and I also had a 3yo. That was pretty bad timing. Sleep through the night? What's that?
     
  15. obtainedmist

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    Yep, this stumped the on call endocrinologist fellows as well! I googled it and got the answer! Sheesh! The hair loss was really depressing for my daughter!:(
     
  16. Nobby1

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    Bumping this for our newbie friends.
     
  17. sremillard

    sremillard New Member

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    Absolutely love the alarm idea. I've been wracking my brain trying to figure out how to get my son to wake up to test, and hopefully now i've found it. :)

    My son was dx at 2 yrs old, and he is almost 10 now. A year ago was the first time I was told to bolus 15 mins before breakfast. He is quite resistant to insulin in the morning especially because of the growth hormones released over night, and would spike quite high every morning after breakfast. We thought that lowering the carb ratio would correct it, but he ended up going so low that I had to pick him up from school because the higher dose was lasting long after his food was digested. So went back to original carb ratio, bolused 15 mins before eating and beautiful numbers since.

    There are sooooo many things that we could be told in the beginning but we probably wouldn't be able to absorb it all. It's forums like this that make all the difference. Trial and error. Thanks everyone!
     
  18. Lizzie's Mom

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    Fear can make glucose levels soar or sink. For our CWD, fear makes her low. We discovered this during Tornado Warnings when we were hiding in our safe place. After two lows in two consecutive Tornado Warnings, I learned to hand her a banana to eat while we were all getting situated till the storm would blow over.

    On the other hand, a bad dream in the middle of the night will make her go high (adrenaline?).

    Go figure.
     
  19. Christopher

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    Someone referenced this thread in another thread so I thought I would bump it up for any newly dx parents.
     
  20. dpr

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    That in the first week after diagnoses when/if they start the honeymoon their insulin needs may drop to 1/3 of what it was just 5-7 days before.
    That "you should wait a year before going on the pump" for "more experience". Ask for it as soon as you want it, if you want it.
    I keep all of my daughters diabetic information in my iPhone as well as at home. All the information to completely reprogram her pump, all her prescription information etc.
    Ask your endo or clinic team for as many extra supplies as you can get. They get a lot of it for free from the reps. Keytone meters, needle burners, different infusion sites, test strips etc.
    Empty plastic milk jugs are great sharps containers. Keep the screw on cap. Our dump takes them for free.
     

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