Question from Shawnee, Kansas, USA:

For the past three years, I have noticed behavioral changes with my son. We went to see an endocrinologist and began testing his sugars. Some of his morning readings, when he is in a great mood, are 94 mg/dl [5.2 mmol/L]. If they are over 130 mg/dl [7.2 mmol/L], he is moody and refuses to get up. His morning sugars vary from 110 mg/dl [6.1 mmol/L] to 180 mg/dl [10.0 mmol/L]. His bedtime sugars are 130 mg/dl [7.2 mmol/L], 188 mg/dl [10.4 mmol/L], 312 mg/dl [17.3 mmol/L], 147 mg/dl [8.2 mmol/L], 280 mg/dl [15.6 mmol/L], 194 mg/dl [10.8 mmol/L], 302 mg/dl [16.8 mmol/L], 335 mg/dl [18.6 mmol/L], etc. This would be two or more hours after his dinner. Two hours after lunch may yield sugars at 152 mg/dl [8.4 mmol/L], 153 mg/dl [8.5 mmol/L], etc. His highest reading has been 387 mg/dl [21.5 mmol/L]. When he is in the 300 mg/dl [16.7 mmol/L] range, he becomes withdrawn, his eyes glaze over, and he won’t talk. I call it his “zone.” By testing his sugars, I can now tell when they are going high.

My son’s A1c was 5.1. He then went for a three hour glucose test which came back normal. The doctor then suggested he be tested for MODY, based on a two month monitoring of his sugar. Those tests just came back negative. I am still not sure if that means he is negative for MODY or they could not determine which type of MODY he may have. I had gestational diabetes with him. My mother, grandmother, and great grandmother all had diabetes. My mother was diagnosed at age 30 and is now taking shots of insulin.

I am extremely frustrated with doctors right now. I just want to be assured it is okay that my son has high blood sugar with no possible explanation at this point. We had his eyes checked and he has gone from 20/30 to 20/50 in a matter of six months. I am hoping the sugars are not the cause for his vision problems. I am not sure where to go from here. The tests are getting expensive and not yielding any answers for his sugars. He is an otherwise healthy, skinny seven-year-old. I worry about his focus in school, his tiredness when his sugars are high, his moodiness, and how he becomes withdrawn all due to his sugars being high. Where do I go from here? My gut feeling is telling me something is not normal.