My seven year old daughter has been having blood sugar swings for a year and a half now, but we have no answers. She weighs 42 pounds, has not gained in a year, and she occasionally wets the bed. She had a glucose tolerance test, peaked at 500 mg/dl [27.8 mmol/L], and saw endocrinologist who said she was in a honeymoon phase. Her A1c was 5.4%. He put her on a diet and then on the third visit said she had a lot of normal sugars, did not have diabetes and to quit testing.

Her pediatrician did a second glucose tolerance test which was ended in the third hour because her blood sugar dipped to 32 mg/dl [1.8 mmol/L] and never went high. I requested a second opinion and was told she may be in the honeymoon phase and to go back on her diet and check her three times daily. Her lab work was all normal, and her A1c dipped to 4.6%.

After a year her endocrinologist said she was fine, to quit testing her, and she did not have to see my daughter again. Her blood sugars ranged 60-300 mg/dl [3.3-16.7 mmol/L], and now, three months later, my daughter still has high blood sugars. I called a few weeks ago when her blood sugar was over 300 mg/dl [16.7 mmol/L], and they said they could not explain it, but again to quit testing her. After school yesterday, she was 275 mg/dl [ 15.3 mmol/L] with negative ketones.

If I quit testing her, and she has high blood sugars, how responsible is that? Do we need to seek another opinion? Her A1c is normal, but couldn’t she have enough lows to balance it out? Just because they can’t explain it, does it mean there’s nothing wrong ? What else can be causing this?

There have been a sufficient number of random blood glucose levels greater than 200 mg/dl [11.1 mmol/L] to suggest that your daughter has some form of diabetes, and you should ask her doctor for a full set of antibody tests if these have not already been done. She still could have prediabetes between the preclinical and the clinical phase which would account for her normal hemoglobin A1c tests. However, in view of her poor weight gain, the occasional hypoglycemia, and the story of abdominal pain, I think that the spectrum of antibody tests should also include a test for anti-glutamyl transferase antibodies as an index of celiac disease (See Mohn A, Cerruto M, Lafusco D, Prisco F, Tumini S, Stoppoloni O, Chiarelli F. Celiac disease in children and adolescents with type I diabetes: importance of hypoglycemia. J Pediatr Gastroenterol Nutr. 2001 Jan;32(1):37-40.) Some 8% of children with type�1A (autoimmune) diabetes also have celiac disease both of which are components of the Autoimmune Polyglandular Syndrome Type II.

DOB
Additional comments from Dr. David Schwartz:

It is important to remember that the home glucose meters are screening devices only! One cannot establish a diagnosis of diabetes with these devices. The diagnosis is by a venipuncture (out of vein) serum glucose run in the laboratory: fasting serum > 125 mg/dL, random > 200 with concurrent symptoms, or 2 hour level after a properly done oral glucose tolerance test of > 200.

One would hope that the glucose tolerance test was properly done with the correct preparation and instructions to you as to how your child should have eaten on the 3 days before the test, and that a specific glucose load was given (1.75 gm/kilogram body weight to a maximum of 75 gm), and that insulin levels were also measured.

The home meters need to be calibrated or at least have proper techniques. Depending on type you use, one needs to correlate the ‘code’ on the glucose strips with the computer chip; one should use the control range test solution to be certain that the values you get are correct. As a very real example, just last night, my wife checked her glucose on her device and the reading was substantially elevated for her at > 290 mg/dl [16.1 mmol/L]. But when we tried to confirm with the control solution, the machine read way too high. (Control solution should have been 70 mg/dl [3.9 mmol/L] but the reading was in the 180s [mg/dl, 10 mmol/L]!)

Finally, proper technique for preparation of the finger poke is imperative! Very clean and dry fingers!

DS