THE STORY OF ONE FAMILY'S JOURNEY WITH TYPE 1 DIABETES AND CELIAC DISEASE.
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Thursday, October 28, 2010

Baring it all! Getting downright NEKKID!

REYNA had an awesome idea and I'm totally psyched to chime in :)


CANDY HEARTS is getting NAKED, people!   
BEARING IT ALL FOR THE WORLD TO SEE!!!
No, no, no.....don't get the wrong idea.  
This isn't about **ME** per se....
It's about Sugar's pump!


By the way, I'm going to share with you what works for **HER**.  PLEASE don't assume the same things would work for anyone else and PLEASE don't interpret this post as medical advice about managing the insulin pump in your life :) 


And ONE more thing.  Please don't judge.  I'm going to be brutally honest here....and it could surprise you!  It might sound crazy, but it works for us!  Sugar hasn't had an A1c over 7.5 in the past 3 years... so we're sticking with it and, if anything, adding more madness to tighten the control belt!


OH!!!  And if you're a new/prospective pumper, PLEASE remember that we've been pumping for almost 4 years.  These patterns have been a work in progress for THAT long -- little tweak here....little tweak there....you'll have your endo team to help you until you get the hang of it.  It may appear daunting, but it's the culmination of tweaking things over the course of FOUR years.  PLEASE remember that and don't let this overwhelm you!!!!!!!!


Alright...turn on the lights....I'm dropping the towel....


1. What kind on insulin management mode do you use? 
Sugar wears a PINK Animas Ping :)

2. How often do you inject/change pump sites? 
Oh, geez....she wears the Animas Insets (straight insertion).  We change her site every 3 - 6 days, depending on how much insulin is in the reservoir.  Yes.  I said 6.  Sometimes she has enough insulin, her numbers are good, and we just forget.  You see, it's common for that "less than 10u" alarm to pipe up at inconvenient times.  When this happens, we typically just refill the pump and move on instead of doing an entire site change.  But then we forget. And, before you know it, it's been 5 or 6 days.  I DO NOT ADVISE you try to make this your standard practice.  It increases the risk of malabsorption and infection.  But, what can I say?  We live on the edge over here.

3. What type (s) of insulin do you use? 
Novolog.  Her DIA (duration of insulin action) is set for 3 hours and that works well for us.  

4. What are your basal settings ? 
Oh dear.  Pre-Animas, she pumped with Cozmo.  We had (and I'm not kidding) 16 basal changes over the course of the day!!! (Coz allowed changes every 30 minutes, and didn't cap the number of changes a user could have.)  When she switched to Animas, we were forced to weed a few out, because it only allows 12.  I think the smaller number of basal changes are directly related to the 0.025u  increment of dosage.  With Cozmo, I would frequently switch things up after 30 minutes, trying to decrease the hourly amount of basal to compensate for the inability to program a smaller dose.  

2400 - 0500....0.275u/hour
0500 - 0700....0.325u/hour
0700 - 1100....0.5u/hour  (**THAT'S HALF A UNIT!!!  EEK! The first time I programmed it, I nearly passed out.  If I wanted to try to ignore it, this is evidence that my baby girl is, in fact, growing up...sniff...sniff....)
1100 - 1300....0.475u/hour
1500 - 2100....0.4u/hour
2100 - 2400....0.35u/hour

5. What are your correction factors ?
2400 - 0300...170
0300 - 0500...160 (A little insulin goes a LONG way!!!!  If I up that to 170 like the rest of the day, she crashes!)
0500 - 2400...170

6. What are your meal ratios ? 
Well...be careful what you ask for....

2400 - 0300....24g
0300 - 0600....20g  (is it just me or is it completely crazy that I *know* what her carb ratio needs to be in the middle of the night, just before the early release of the growth {and other} hormones, otherwise known as the Dawn Phenomenon?) 
0600 - 1000....16g
1000 - 1400....18g
1400 - 1700....34g
1700 - 2400....28g

7. What do you do for activity and/or PE?
We leave 10 carbs uncovered from her previous meal.  She has PE twice a week, once in the morning and once after lunch.  She doesn't get checked before PE because it falls within an hour of eating breakfast or lunch, but she does get tested after PE.  Lately it's looking like we may have to increase that 10 uncovered carbs to 15.

8. How do you manage Pizza, Macaroni and Cheese, or any other "difficult to manage" foods?
Well....to be honest....we don't have much trouble with any certain foods!!!  On the rare occasion we do have a pasta/pizza spike, I just correct it 2 hours after the fact, and sometimes she'll need a second correction, but not often.

9. How do you prefer to manage your logs/data? 
Say again?  Did you say LOG?  What is this "log thing" you speak of?


In all honesty, I **NEED** to get back on the logging train.  It's a habit I should be modeling for Sugar and it also helps me track trends.  Cozmo had a great computer software program that I really liked.  I haven't ever tried the one from Animas.  Truthfully, however, the most effective logs I ever kept were handwritten.


But, thanks to her pump(s), I haven't kept a log in 3 years AND she's had the best control for those 3 years out of her 5 years with D since I stopped logging....is there a link? Hmmmmm....I don't know??????
Sugar in the buff!
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9 comments:

  1. What an adorable photo!! She looks so much like you Wendy! These have been so fun to read...I am pretty sure as time goes on, our basals and ratios will look a lot like yours. I am all about the fine tuning!

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  2. Sugar is growing up! BUT I LOVE THAT BABY PICTURE!! A D O R A B L E !

    Thanks for putting it all out there!! NEKKKKID!

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  3. What a neat post! It is amazing how different everyone's rates really are! I Love, LOVE, LOVE the picture! Naked babies in the tub are so cute! (of course not in a gross way ;))

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  4. (.5) I was thinking .05!! YES, .5 would make me freak out too! I had to do a .40 basal for Maddison once (so I thought) and it didnt go so well. AMAZING how each little body needs something SO different!

    I dont know HOW you can manage D so well without a log....I cant even remember what day it is half the time! (I only log when numbers numbers go bonkers though)

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  5. I'm in love with the picture. Cutie! I wish my boys could go 6 days sometimes, but alas...it always ends in disaster for us. :( Thanks for bearing it all!

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  6. She does look like you!!! Love that photo. I am with Meri...hella-jealous of the 6 days! Commando-Joe can only seem to have decent absorption for 36 hours.

    I love your multiple crazy settings...I don't feel so naked, crazy, and alone in my craziness over at BB. I do like me some complicated settings. It took me years to get things "just so" - LOL.

    Thanks for showing us your naked pancreas-self Wendy!

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  7. Thank you for sharing and the picture is sooo cute!

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  8. what a cutie patootie!! Thx for sharing yourself as a pancreas!

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  9. Thanks for doing these guys. I am finding them very interesting, and confusing at the same time. Figuring out all those basals seems extremely daunting. I don't know how you do it without a log. My log book is like my life line
    right now! You guys amaze me. Guess I'll get there eventually :)

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Life For A Child Button 2
While I'm happy to share our experiences with what works, and what doesn't work, for the management of Type 1 Diabetes and Celiac Disease in our house, please do not mistake anything you read here for medical advice. Decisions regarding your/your child's health care should be made only with the assistance of your medical care team. Use any information from this blog at your own risk.