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EXTREME insulin resistance and dehydration no matter water and insulin intake

Discussion in 'Parents of Children with Type 1' started by Our3girls, Mar 29, 2017.

  1. Our3girls

    Our3girls Approved members

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    My daughter is 16 and been diagnosed type 1 for 7.5 years. For the last 5 years she has been incredibly insulin resistant. They thought it was a resistance to a specific insulin and changed her to every rapid and long acting insulin manufactured with no change. We've even tried insulin sensatizing pills and hormones using birth control. We are currently using Humilin R U500 which is the concentrated. She started out on low doses just 1.5 months ago and it seemed to work and is already up to 50-80 units a day plus using U100, 50-100 units a day, for any carbs and additional corrections. Before we switched to the U500 she was taking 400-600 units of insulin and would still not register on the meter.
    We struggle to keep her out of DKA regularly. When it gets bad her body rejects her insulin pump and her CGM. They both fail within hours of starting them even when she is in an acceptable range for over 24 hours. She could and most of the time does, especially when fighting ketones, drink 1-2 gallons of water easily but still shows incredibly dehydrated on her blood work.
    So with each hospitalization I try to analyze and troubleshoot. She immediately comes down with IV fluids and is responsive to insulin for anywhere from 4-7 days like before she became resistant. So I have been pushing her endos at Stanford to check her hydration levels and to try doing fluids at home on IV weekly or every 2 weeks as determined by her blood levels is needed. They are talking it over with all of them this week in their meeting.
    So now for the question :) Does anyone have any experience with anything similar? Seen any research on anything like this? I know she can't be the only one fighting this battle. We are willing to listen to ideas, we've tried probably most accept more invasive like regular IV therapy. Even entertained IVIG antibody treatments. We are desperate as we are well educated on the adverse effects that these highs have on her long term and the challenging immediate problems. We have seen atleast 6 specialists and talked to many more that are baffled and have no advise after doing all the tests and going over her numbers/carbs/insulin intake. We are willing to go and do whatever it takes to get our girl healthy.
    Quickly- she is at an ideal weight of of 115-120 pounds at 5'2" and active as most teenagers at every opportunity, sometimes it challenging. Before we hit all this craziness for the first 2 years of diagnosis she was in a non diabetic a1c range and never went above 150 or below 70.
    Thanks in advance from very desperate parents.
     
  2. obtainedmist

    obtainedmist Approved members

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    I'm so sorry you've been dealing with this! I hope someone on this site can give you some ideas/encouragement! Take care!
     
  3. MomofSweetOne

    MomofSweetOne Approved members

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    Sent you a PM.
     
  4. Snowflake

    Snowflake Approved members

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    This sounds like an extremely unusual and scary situation. I'm sorry that you're going through this, and I hope that your daughter's team can help you find some answers.
     
  5. Ali

    Ali Approved members

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    So sorry. Did you try animal based insulins? Pork/beef?
     
  6. wilf

    wilf Approved members

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    How are you measuring blood sugars?

    You say her body rejects her CGM - what exactly does that look like? Likewise the pump rejection?
     

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