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How did you convince your Dr. to run the DNA test?

Discussion in 'Parents of Children with Monogenic Diabetes' started by joy orz, Dec 2, 2009.

  1. joy orz

    joy orz Approved members

    Feb 7, 2008
    Ava was 16 months at diagnosis, but she was always an underweight, colicky baby. We were working with a nutritionist since 4 months for allergy issues and lack of weight gain.

    I always wondered if she possibly had monogenic diabetes, but they won't run the test because she was over a year at diagnosis.

    Anyone else have to fight for this test?
  2. ecs1516

    ecs1516 Approved members

    Dec 11, 2007
    My younger son was diagnosed at 10 months old and they would not run it. Because his older brother was diagnosed 6 months before as type 1 at 3 years old. So they said his must be type 1 too.
  3. Charliesmom

    Charliesmom Approved members

    Jan 8, 2009
    I've been wanting to have the test done for Charlie, too. He was diagnosed at 18 months but his personality totally changed when he was around 6 or 7 months old. I've been wanting to ask but his endo looked at me like I was crazy when I mentioned my worry about vitamin D deficiency and figure she will do the same about this.

    Can it be a slow onset like that or does it have to be quick?
  4. mrcool

    mrcool Approved members

    Feb 24, 2009
    Our son was 7 months old at dx, so he was in that age range when they still consider monogenic diabetes a possibility (though quite rare). But what really pushed our endo to order the tests was that Rohan was negative for antibodies at dx. Turned out that he didn't have monogenic diabetes. He also was in 10th percentile for weight since birth.

    So maybe if the antibody tests have been run and they're negative, your endo might pursue it?

    There's also a neonatal diabetes study at University of Chicago, they do saliva sample, but I don't think they take anyone who was over 12 months old at dx (maybe only if antibody negative). http://www.kovlerdiabetescenter.org/registry_testing
  5. Mody_Jess_Pony

    Mody_Jess_Pony Approved members

    Jun 14, 2008
    The gene as I understood when I was DX is that you only need to inherit one gene from either parent(it can be recessively carried by either parent but actively inherited by a child) Neo-natal may not be a possibility, but possessing the MODY gene is a possibility at any age. I can't quite remember what activates it(not sure they understand that yet). We paid out of pocket and we had to have it shipped (and it's not cheap at $500 a gene) but my D behaved so incredibly different that it had everyone stumped.
    I would push forwards for it using the fact that MODY gene can be POSSESSED by any ages and each gene presents differently.
    and if you google MODY and read each gene description it may help.
    I hope I was helpful
  6. mmgirls

    mmgirls Approved members

    Nov 28, 2008
    We paid out of pocket for the testing about $600.

    We did not have to convince as much as have them figure out the paperwork.

    Mckenna was dx at 13 months but low birthweight and in hindsight was showing signs since beore 9 months, I just had to have it done so that I would not be kicking myself if we found out later that she did not need the pump for insulin.

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