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5 month old w neonatal diabetes

Discussion in 'General Discussion' started by Mom of super sweet infant, Feb 9, 2014.

  1. Mom of super sweet infant

    Mom of super sweet infant New Member

    Feb 8, 2014
    My son was born healthy. At 3 months old he appeared to have symptoms of a stomach bug. Two days later we were at the emergency room and he was diagnosed with blood sugars over 900! It was a complete shock. We were quickly shipped to another hospital.

    This is where our adventure has begun. It has been two months and very little progress has been made since his diagnosis. The first round of genetic tests have come back normal. We just had more genetic tests completed which will take another month for results. Everyday I am in fear. Fear because I cannot control his sugars. Everyday I am giving my son injections of Lantus (which has been giving stable results), diluted Humalog (which is like a gamble each time on the results) and formula (which makes the sugars rapidly spike and drop). On a good day my sons sugars will be less than 300 with an occasional low in the 50's. On a bad day (ex. vaccine or RSV) visiting the ER to try to get the sugars under 600.

    So far we don't have an exact diagnosis just "neonatal diabetes". I have found that many doctors are not familiar with this form of diabetes. I would love to hear from anyone who has had a similar experience. Thanks!
  2. Brenda

    Brenda Junior Member

    Oct 19, 2005
  3. C6H12O6

    C6H12O6 Approved members

    Sep 16, 2008
    Did they test his sugar at all around the time of his birth ?

    What about antibody testing ?

    Has anyone spoke to you about getting him an insulin pump ?
  4. Nancy in VA

    Nancy in VA Approved members

    Jul 16, 2007
    Where are you located? Chicago is definitely the main location but my endo in DC has worked with Chicago and has a number of patients.

    The good news - ifs it's neonatal for real, you won't be dealing with insulin - just pills. You'll be monitoring once in a while because the medication will change as the child grows up, but the pills make the pancreas turn on and work normal so none of the ups and downs like you have with insulin.
  5. TheFormerLantusFiend

    TheFormerLantusFiend Approved members

    Sep 10, 2006
    There are multiple forms of neonatal diabetes and not all are treatable with pills.

    The older version of this forum had a Neonatal Diabetes subforum- I'm not sure if we still have it. We do still have a few members whose children have neonatal forms of diabetes. We do have a subforum that is for parents of children with Monogenic Diabetes- neonatal diabetes generally fall within that category.

    One blog I like that unfortunately hasn't updated in months is http://twoorgansshort.blogspot.com/
    The author of the blog is a man whose son was born without a pancreas. His son is currently five years old, but he and his wife have certainly experienced dealing with diabetes in a five month old. His son wears an insulin pump and I believe was already wearing one at five months old.

    This blog is by a woman with two children with a form of monogenic diabetes that is treatable with pills.
  6. smcnair

    smcnair Approved members

    May 2, 2011
    My son and I have neonatal diabetes. I was misdiagnosed with type 1 in 1976. As mentioned by TheFormerLantusFiend, not all forms of neonatal diabetes are treated with pills. Both my son and I are on insulin.
  7. MomofSweetOne

    MomofSweetOne Approved members

    Aug 28, 2011
    Has your doctor ordered a CGM? I would want one immediately in a child not able to communicate lows - and who needs to sleep frequently.

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