Additional question re undiagnosed teen

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WIJ1999 posted on Tue, Aug 13 2013 4:24 PM

My son is on his second round of Type 1 Anti-body tests, which now include two newer one's that are "newly released" for use.  4 have come back negative, and we are still waiting on one of them.  It has been about three weeks now.  We also started MODY testing process about three weeks ago, and hope to hear back by late August.  If they all come back negative, will an endocrinologist change a diagnosis from Impairted Glucose Tolerance to Diabetes (and what type?) or just stick with IGT.  I know every endo is different.  Just trying to anticipate some options we might need to consider.  Son's blood sugars are getting better, strangely.  His fasting are between 110-125, and his post-prandial are between 130 and 160.  I know those are great # for someone who HAS diabetes and is being treated. Will has not been diagnosed with D and is not on any treatment, so they are just high blood sugars, which aren't good.  Should he be put on insulin regardless of test results?

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Debbie replied on Mon, Aug 19 2013 3:53 PM

I spoke to one of the doctors here at Joslin and he said that it seems like your son's endocrinologist is ordering the necessary tests to confirm both the presence and type of diabetes.  In some instances, youth with type 1 diabetes may have negative antibody tests and some youth with type 2 diabetes or MODY may have positive antibodies.  We suggest that you continue to work with your son's endocrinologist to arrive at the correct diagnosis which can take some time, and may include repeated tests and periods of routine blood glucose monitoring to assess trends.  Good luck!

Debbie Butler, MSW, CDE

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WIJ1999 replied on Wed, Sep 18 2013 6:13 PM

Hi there,

Just wanted to send back a note that my son received his genetic testing back and he has been diagnosed with MODY2.  Dr. was not surprised as he seemed like a classic case.  Three months of elevated blood sugars, but not too many above 200, and no signs of it turning into Type !.  So there we are.  Good to know.  Thank you for your help.  If we end up moving to Boston, we will certainly look to move our medical care to Joslin.  It is hard to believe that so many Drs, even well reputed one's outside of research institutions, have not even heard of MODY.  Thank you.

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Debbie replied on Thu, Sep 19 2013 3:56 PM

You are very welcome.  Thank you for the update and good luck!

 

-Debbie Butler, MSW, CDE

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