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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. caspi

    caspi Approved members

    Oct 11, 2006
    This was another biggie we were never told either!
  2. TheFormerLantusFiend

    TheFormerLantusFiend Approved members

    Sep 10, 2006
    Meters can be super duper inaccurate. I should have realized that since my very first simultaneous meter and lab blood sugar readings had a meter reading 16.5% off, but my next couple were more than 20% off. And I was trying to see if my numbers were trending up or down by doing tests half an hour apart at bedtime!
  3. Lee

    Lee Approved members

    Oct 5, 2006
    Zofran, sofran, zofran...Tummy flues are a beast! If you cannot get an RX for Zofran, keep something like Pepcid on hand for upset stomachs - it kills the stomach acid that causes puking (But not something like tums, which expands in the belly).

    There is no real reason to wait to pump.

    Emla is a lifesaver for numbing sites, not something that will harm your child.

    ETA: Great thread Chris!
  4. TheTestingMom

    TheTestingMom Approved members

    Mar 5, 2010
    OMG, are you serious? 2 yeas in and I never knew that until a few minutes ago! This upsets me so much, my guy was (is) a very very picky grazer. To think of him being hungry and us not letting him eat because enough time hadn't passed makes me want to cry.... and scream! Why? Why is this not said right off the bat? I spent (spend) a ton of time reading about T1D and I never came across that information. Grrrr, I'm mad.
  5. Lisa - Aidan's mom

    Lisa - Aidan's mom Approved members

    Dec 3, 2011
    Thank you so much for starting this thread; keep those great tidbits coming.
    We too learned about the bath the hard way.
  6. Connor's Mom

    Connor's Mom Approved members

    Nov 10, 2011
    I started writing this out as a little book but, someone told me it would never sell! I would have loved the things no one will tell you about Type1 book lol!

    That everyone will lump Type 1 with Type2 and they will say some really stupid things like "you shouldn't have let them have all that candy"

    That your child's blood sugar will go up or down way before you see the clod or flu hit.

    You should keep testing at night, you'll be surprised at what you find at those hours.

    Low carb is great but, let them eat! They can have everything in moderation just like anyone else. Let them have a couple cookies or a cupcake or a McFlury if they really want it. You don't want them sneaking food because they're hungry and afraid you'll tell them "No."
  7. Gwyn

    Gwyn Approved members

    Aug 4, 2007
    great thread!

    Carb factors changed everything for us. Also knowing how much 1 carb will raise blood sugar so you don't overcorrect all the time.
  8. JaxDad

    JaxDad Approved members

    May 24, 2010
    That fat in foods slows the release of carbs and also raises blood sugar all by itself a few to several hours after eating.
  9. momof2here

    momof2here Approved members

    Apr 7, 2009
    insulin - corrections....

    That, together with a cgm, when experiencing high blood sugar, you don't just have correct, hope it will come down and then change pod (or site). With a cgm, when we experience abnormally high blood sugar, after checking with a finger-poke, I bolus for food (my son always wants to eat) and, depending upon how fast that high number comes down, I can evaluate how many carbs to leave off of the food he will eat. This, together with regular pre-bolusing, has resulted in an a1c under 6.0 for over a year. Bolusing 'for food' when high, to bring the number down has also helped me to not jump to the conclusion that a pod is bad. When I used to change a pod if the high number didn't go down with the correction, I now am much more informed as to whether the pod is truly bad. Where I used to just do the correction and hope the number goes down (with a bolus or 1-2 units), I now will bolus 10 units, as if he is going to eat 70 carbs and evaluate the trend on the cgm. Checking bg, prior to eating helps to firm up the info and helps me to weigh how quickly that number went down v/s how much insulin was delivered. For us, it works like a charm but is not something that should be attempted by those not intimately familiar with insulin's impact on bg. I also think that sometimes the pod gets clogged and this large bolus forces the clog out and solves a problem.

    Also, with omnipod, it is imperative to do an extra bolus whenever a new pod is put on (I would only feel comfortable doing this along with having a cgm). The bolus that I use, every time, is 1.4 units in addition to any correction, and it hasn't caused a low yet! We used to wind up over 300 two hours after pod change.

    I am grateful that we began using a cgm and pump very quickly after dx but I wish endos or np's would educate people about the benefit of this technology sooner rather than later. There are about 10 type 1's in my son's school and he is the only one who uses a cgm. That shocks me however, even the school nurse wasn't familiar with a cgm when we began there.

    I learned most of the nuances of making the most of the cgm and pump through experience and reading but I wish that the endo or np was familiar with those things so that we could have used the pump/cgm to its greatest potential from very early on...

    For example, my son is typically between 80 and 90 all night long - this is accomplished through reviewing the line graph on the cgm and making small adjustments to basal insulin until a straight line is achieved.

    I also wish the endo could have told me that, when my son is stable at night, however, running on the lower side (under 80), I can do a temp basal for 1/2 hour to 1 hour and bring that number up, without waking him up. I love that and it took me a while to figure it out.
  10. lironey

    lironey New Member

    Sep 16, 2009
    Thank you so much for #1!!! It should go directly into any book about managing T1D.
    Another thing, I have a feeling that the A1C although claimed to reflect a 3 months BS average, actually reflects more the last month average and far less the first two. We had a perfect 2 months and a really bad 3rd month and the A1C seemed to be derived more from the last month. Any thoughts?
  11. lisanc

    lisanc Approved members

    Dec 22, 2009
    Endos always tell patients they need a bedtime snack ... big myth! In our case, it is better to go without unless you need it to bring your blood sugars up.
  12. JaxDad

    JaxDad Approved members

    May 24, 2010
    Hemoglobin reacts with glucose to form glycated hemoglobin (A1c). More glucose means more reactions which means more type A1c hemoglobin. Once the hemoglobin is converted it stays that way until the blood cell dies. So high BGs get you higher A1c for a while.

    A1c is like a persons reputation, it can be good and quickly ruined. If not good, it takes a while before it gets better.
  13. JaxDad

    JaxDad Approved members

    May 24, 2010
    You don't "have to" inject air into the insulin bottle to replace the insulin removed. It takes a little more pull as you use but the bottle but not injecting the air makes it much easier to fill the syringe/pump cartridge without bubbles.
  14. Lovemyboys

    Lovemyboys Approved members

    Sep 19, 2010
    Yes! Our little 13 month old only needed 1-2 carbs to bring up a low.
  15. destea1

    destea1 Approved members

    Jan 3, 2012
    We're still only 9 weeks in and on injections at this point - but I wish our Endo would've mentioned the Inject-Ease for my daughters shots! They knew we were struggling and she was having a really hard time and a local support board mentioned it overwhelmingly - and I'm so glad they did! She can push the button herself to inject the needle while I hold it at 3 and it really helps alleviate her stress before getting her shots.
  16. Sassy

    Sassy Approved members

    Dec 11, 2011
    Very wonderful tid-bits of information!! Thank you!

    I read in the Pink Panther book about the hot showers after a shot, so I asked the endo about that in week 1 (we're now going into week 5). The endo dr. said it's just a myth. :confused: Not trusting that, I still wait at least 30 minutes before letting him shower after a shot.

    One question...what about swimming in the summer time after a shot??
  17. ashtensmom

    ashtensmom Approved members

    Jun 24, 2011
    This may be true, however, the reason you inject air into the bottle is to equalize the pressure. There is yet another trick to not get bubbles but still inject amount of air equal to the volume withdrawn, and that is to have the needle "out of the fluid" when injecting the air. It's harder to do with a full bottle of insulin, but if it is not full you can just tip the bottle so the needle is out of the fluid before injecting the air. If you don't equalize the pressure you will get spray-back when withdrawing the needle. All these are rules/knowledge I have to apply with my profession, however, spray-back of insulin is no big deal other than being stinky... I work with chemo drugs so I definitely don't want to be exposed to that, so I am ubber careful :p

    Another tip: when withdrawing from a penvial, definitely don't inject air as there is no pressure in those vials and if you inject air you will pop the rubber bung and squirt insulin all over.
  18. Christopher

    Christopher Approved members

    Nov 20, 2007
    I have never seen the "hot bath" issue with swimming after a shot in the summertime. What you DO need to watch out for with swimming is your child going low from the exercise. I always test before she goes in the pool and may even give carbs to raise her bg up more than I normally would. I also have her test more often than normal.
    Last edited: Jan 5, 2012
  19. lmf1122

    lmf1122 Approved members

    Sep 21, 2008
    Yes. Swimming can definitely cause lows, even with the pump removed, as can playing in the snow. I usually have dd sip juice during these activities to keep her blood sugar up.
  20. MamaBear

    MamaBear Approved members

    Jul 20, 2010
    Oh no it is NOT just a myth! We were told about it by one of the PICU nurses the day my son woke up. I have seen him almost pass out during a shower once, even though we had waited. And I have read on here someone posting about her daughter passing out after a shower. We wait 1 hour, and I have him test before showering if I feel unsure.

    As for swimming that water is not the same temp, but the activity will make my son's BG drop. As advised by folks here, we test before swimming, and then every hour, and he has bits of snacks and sprite along the way.

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