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From Succasunna, New Jersey, USA:

Last year, in February 2006, I wrote to you and gave you a brief history of my late husband and his bout with MODY diabetes. At that time, my 13-year-old son, who tested positive for the MODY gene, was asymptomatic. I am writing now because there have been some changes in his tests and I am becoming more and more frustrated with the way things are being handled.

My son's blood sugars have not exceeded 200 mg/dl [11.1 mmol/L] (often staying in the mid-120 mg/dl [6.8 to 6.9 mmol/L] range after dinner). His A1cs have all been 5.7 and below, based on the testing he gets every six months. So, the doctor does not seem to be concerned. My son also does not have frequent urination or frequent thirst, but, six months ago, they found protein in his urine. The doctor assumed it was a contaminated specimen. Two weeks ago, they found glucose in his urine.

Given the frustration my husband endured for 10 years when his blood sugars were not out of control and he had no symptoms of diabetes, he suffered dramatically when he developed retinopathy and his kidneys failed seven years after his diagnosis. When I last wrote, you suggested my late husband may have had a genetic tumor on his adrenal gland, I looked up all the information you gave me and it didn't seem to fit everything my late husband had been through. And, now, I am concerned that my son, who has also been diagnosed with MODY (MODY 3), will suffer kidney damage before being diagnosed with diabetes, as I have read can occur.

I can't find anybody to help me. Is there ANYBODY in the states who understands the MODY type of diabetes? My son's current pediatric endocrinologist does not seem to understand that this is not type 1 or 2. I understand that they treat MODY like they would a type 2, but it appears they are waiting to see high numbers before they do anything. The protein and glucose in his urine should be two big red flags, right, especially given his father's history? Is there something I am missing?


Nobody really has huge experience with MODY type diabetes since they are relatively rare. But, we know some clinical patterns and knowing what happened to your husband should provide some clinical clue as to what is likely with your son, how aggressive one should be, etc. The information you provide is not detailed enough to give you any answers. But, if there is protein, the real questions remain what is the cause, how much protein, is it persistent or intermittent, what about blood pressure, etc.? So, I would check timed urine samples several times and then try to make some decisions. If they are abnormal, worsening, persistent, then I would also be aggressive and treat, usually with an ACE inhibitor such as lisinopril. The goal should be to try to protect the kidneys and ACE inhibitors should be able to do so. If there is microalbuminuria, then the goal should be having no microalbuminuria and keeping this test result negative.

Same for the A1c. If this can be done with dietary changes, then this should be attempted. If not, then decisions about what medications to try are based upon which type of diabetes, likely response, side effect profile of medications, etc.

Is it not possible to ask these very same questions to your son's diabetes team and have a defined consultation so that you are all satisfied? I would think that this should be your next step. Alternatively, change doctors and get someone who can provide such information, service. Even if the exact information is not well known, you can have a good and detailed conversation to let you know what is recommended, why/why not and to have everyone participate fully.

By the way, the world's MODY expert is Dr. Stephen Fajans in Michigan.


Original posting 18 Dec 2007
Posted to LADA and MODY


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Last Updated: Tuesday April 06, 2010 15:10:16
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