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The thing I forgot about ketones...

Discussion in 'Parents of Children with Type 1' started by Lee, Jul 5, 2014.

  1. Lee

    Lee Approved members

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    Is that they can be deadly

    So, it is a week, and we are all ok, but I made a dumb dumb mistake. I got too comfortable and forgot something very basic. After 9 years of never, ever having a problem with ketones, we stopped checking. She is on Lantus as well now, so really, she never gets ketones. Until she got a kidney infection. Saturday morning, I tested her at 8am and she was 136. She did not feel good and wanted to go to the dr. It NEVER even crossed my mind to test ketones. Why? Who knows. I guess we were out of the habit, too complacent after 9+ years.

    An hour later, she begged to go to the Dr. We ended up in the ER waiting about 2 hours, and in this time, her bs shot up to Hi. Once she started panting, they decided it was an emergency and brought her back. She was then diagnosed with sever DKA. Her PH was 6.8. The doctor told us she had a 1 in 20 chance of dying.

    DKA kills 1 out of 20 people.

    We were in the ICU for 24 hours until her DKA went away. At that time, she started having severe stomach cramps. Who knew that DKA can lead to pancreatitis? I never even would have thought. She was not allowed to drink for 80 hours, not even water. She was not allowed to eat for 92 hours. She was given nothing to control her hunger because that might cause the pancreas to release it's enzymes.

    Overall, we were in the hospital for 5 days and the service trip to the Dominican Republic that she worked all year for was cancelled. All because I forgot to check ketones.

    If your child is sick, ALWAYS check ketones. Nothing like an endo telling you that not only could your child have died and was lucky to be fine, but that this was 100% preventable by peeing on a little stick.
     
  2. DavidN

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    Lee -

    First, thanks for the note.

    Second, if you knew about the ketones, with BG of 136, how would you have treated?

    Thanks again.

    David
     
  3. Lee

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    I could have called my endo and asked. I could have given juice and insulin.
     
  4. 4Gregory

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    I'm sorry this happened. I'm SO glad she's OK! This could have happened to any of us and thank you for sharing your story so hopefully it will not happen to anybody else.

    David, I'm not sure if it's "right," but it has worked for us that if our son has ketones and his BG is normal, we try to have him drink small, measured amounts of a sugared drink like root beer and we give insulin for it. Knowing there are ketones, we keep a really close eye on his blood sugar and give a lot of small doses of insulin while watching for a low.
     
  5. Sarah Maddie's Mom

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    I'm so sorry you two had to go through that :( I'm sure it must have been awful, but I don't know that I would have done anything differently. Most of all, when she said, "I think I need to see a Dr." you listened and I'm so, so glad you did.

    I really hope you won't beat yourself up about this.
     
  6. wilf

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    Thanks for this timely reminder. So sorry you all had such an awful experience.

    It is not clear to me how a kidney infection leads to such dangerously high ketone levels. Maybe someone with a medical background can provide some insight into what processes were at play here.

    Thank goodness she's ok.
     
  7. Lori_Gaines

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    I am not a doctor, but my understanding is that illness creates stress in the body which creates ketones. I too would not have ever thought to check for ketones in this scenario. I know they say to check every time our CWD is sick, and apparently this is why.

    Lee, thank you so much for sharing this. I am so sorry all this happened and so grateful she is okay!
     
  8. kiwikid

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    I think it has been drummed into me (finally) by your post - if they don't feel well with any number, test for ketones.. I'm not a good ketone tester at all, but we do have a blood ketone meter which is even simpler than peeing on a stick.

    I'm glad all is well now and hopefully things will keep improving. You did good!
     
  9. jenm999

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    So scary! Thank you for the PSA. I am so relieved your daughter is OK. This must have been terrifying!
     
  10. sszyszkiewicz

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    Thank you Lee. I am sorry your daughter/family had to endure that.

    It is just amazing....the edge of a knife we all live on.
     
  11. MomofSweetOne

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    I'm glad she's doing better, and thank you for posting this. I was concerned recently when I read a post saying ketones weren't a big concern. I hadn't realized how quickly they could turn deadly, though.

    Your story makes me even more mad that insurance doesn't cover ketone strips.
     
  12. Sarah Maddie's Mom

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    Ketones are tricky. Lee's daughter was sick. Sick enough to want to see a Dr and mom did the right thing a took her in, but sometimes ketones are not dangerous. As in the case of starvation ketones.

    I think the takeaway should be, "look at the whole kid" are they sick? well? not eating? dehydrated?

    I doubt that Lee meant to say that all ketones, in all instances, are cause for panic. Rather she was suggesting, I think, that it's a piece of the total puzzle that she didn't think to add and that she wishes she had.
     
  13. funnygrl

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    I'm so sorry this happened and hope she's back to 100% soon! This is an excellent reminder. I'm terrible about testing for ketones.
     
  14. mmgirls

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    I think the overwhelming take away is that ketones can happen at any BG, even an low to normal BG. The ketones made may not be strictly simple starvation ketones from the lack of carbs ans insulin. They maybe much more than that.

    If your kiddo says that have a tummy ache, feeling unwell, are off of their normal self then check and rule out if Ketones could be the source.

    I personally think that ketones and low to normal BG are the hardest to deal with, so catching it early is the best course of action.
     
  15. nebby3

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    My non-D niece had ketones when she had a kidney infection. They apparently go together. In this case I suspect the child having T1 through it all over the edge because she couldn't normally clear the ketones.
     
  16. caspi

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    I'm so sorry this happened! I honestly don't know if I would have done anything differently myself so please don't beat yourself up over it (easier said than done I know)......
     
  17. MomofSweetOne

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    Our endo has said that even with starvation ketones, you want them to clear before problems occur.
     
  18. StacyMM

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    Lee,
    I'm so glad your daughter is okay. DKA and pancreatitis are huge battles to face and even if her health has been restored, emotionally you and she are likely still struggling! I'd be an emotional mess.

    And, I think that time does encourage us to forget about ketones. My kids were diagnosed without DKA and my daughter was never prone to ketones. We went years and years without ketones and if we didn't have a newer diagnosis to prompt us to think about them again, I don't think I would have tested for them as often as I have in the past year...which would have been so dangerous because puberty seems to have brought them on...and we've been to the hospital twice in the past year after being unable to clear them on our own.

    I'm sure the loss of the trip makes it even harder for her. I hope that another opportunity comes along soon.
     
  19. Sarah Maddie's Mom

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    AKA eat something. '-)

    I think we've disagreed on this before. I follow Hanas' approach on Ketones. More importantly and more to Lee's point, knowing, with regard to the absence or presence of ketones can help make smarter treatment decisions in a child who is ill and that if you're our of the habit of checking and you kid is ill, then check.
     
  20. nanhsot

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    In that scenario, I would have even THOUGHT of ketones much less tested. I'm glad she's doing OK, that's a really scary story, and a good reminder.
     

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