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my daughter

Discussion in 'MODY' started by gandgsmom, Jul 15, 2009.

  1. gandgsmom

    gandgsmom Approved members

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    Hi all...I am very new to this forum and hope maybe someone has some experience with this as we await an official diagnosis. For some history I have been type I..or we think...since I had gd with my first daughter...after that I became extremely sick and was diagnosed as type I when she was 10 months old with an A1C over 10 and weight loss down to 92 lbs. My mother was dx type I at age 16 and my sister is technically considered type 2, although she is not a clasic type 2. So my now 5 yr old began having some symptoms and fluctuations of bs about a yr and a half ago that resulted in low 200 levels and glucose and ketones in her urine simultaneously. We had to fight to get a peds endo apt because her A1C was 5.8 and her fasting was under 90. We were told then to test when symptomatic but her testing for type I was negative and she was fine.

    Fast forward to a year later and we are again having levels elevated sporadically in the high 200s along with more symptoms. Her body can eventually bring them down but it takes a while. We are on a different insurance and were able to get an apt with a different group. They immediately talked about MODY. Part of her testing came back and we are awaiting the genetic MODY testing still. Here is what they reported to me...A1C was 6.2, GAD was negative as well as other Type I antibodies tests, but her C-pepticde was "extremely low" and showing she is making "hardly any insulin". We are pretty sure after researching that she will be positive for one form of MODY as this would explain my families history with diabetes.

    I am pretty scared and Gracie is bucking finger sticks and really adamant she does not have diabetes. I am at a loss as to how to handle this. I don't want to make it a punishment to test her but in reality her behavior is the key to when she is high. She has also lost weight in her face and body overall and her behavior has been very moody and out of sorts more frequently than before (but she is 5) along wtih having a rough winter for illnesses. Dehydrated once severely and required iv fluids because of severe ketones (stomach bug) along with strep 3 times and 2 ear infections. Before this she was a very healthy child.

    She sees what me and my mom go through. I'm on a pump and doing well and my mom does shots and she wants nothing to do with it. She also begins kindergarten in the fall and this is starting to scare me to death.

    Please anybody who can help....I would totally appreciate it.

    Laura
     
  2. kierbabi09

    kierbabi09 Approved members

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    Hi. I was tested for MODY, but the test came back negitive. I didn't have any antibodies either, and my c-peptide came back normal but you know what? I'm insulin dependent and I use an insulin pump.
    if she is making little or no insulin and you and your mom are type 1, then she may be developing type 1.
    You may want to post in the parents section, as you will get more responses.
    Sorry I can't be of more help :(
     
  3. Kalebsmom

    Kalebsmom Approved members

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    I am no expert, but it also sounds to me like she may be developing Type 1, just slowly.

    My daughter is showing the same symptoms as your daughter. Our endo told us since her brother has Type 1 she can not have MODY.

    Please let us know how this turns out.
     
  4. frizzyrazzy

    frizzyrazzy Approved members

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    First take a deep breath! It does sound that with your family history of multi generational "type1" that it would be mody. You seem to have a great team of dr's who are exploring it all for you. Now get on up to the parents area and chat away about whatever is on your mind. Whether she is mody or not - the treatment will be the same for her as any other child with type 1. We've all been there.
     
  5. Rcj176

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    so supportive...i am proud. What a difference a year makes though.
     
  6. gandgsmom

    gandgsmom Approved members

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    yes and what a difference several years make...gonna attempt this again...
     
  7. Lee

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    So - does your daughter have an official diagnosis yet?
     
  8. gandgsmom

    gandgsmom Approved members

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    yes MODY....I think type 2.....but I'm not positive it is the one with regards to glucokainaise
     
  9. ChristineJ

    ChristineJ Approved members

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    You are correct, Laura. The GCK (glucokinase) gene is the gene that causes MODY 2, which is very different from the much more common type 2 D. :)

    Christine
     

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