About three years ago, my now six-year-old daughter had a high blood sugar and sugar in her urine, but it went away. We monitored her for about three months and she did fine with no medicine. She weighs 40 pounds and is about 3 1/2 feet tall. She has lost 2 pounds in the last six months. She has always been underweight and the doctor told me this is because her pancreas is fighting off the fat instead of the sugar.

Two weeks ago, she stayed home from school because she felt sick and dizzy. I checked her sugar and it was 287 mg/dl [15.9 mmol/L]. She stayed high all day. I took her to the doctor the next day and they found high levels of ketones in her urine. They sent us home to a diet and monitoring her sugar. Since then, we have just had a few episodes of her sugar being around 180 mg/dl [10.0 mmol/L]. Today, the doctor and endocrinologist called me and said that we cannot keep her on a no carbohydrate diet, that it is not good, that I need to let her eat normally. Then, when her blood sugar goes up, we should go to the Emergency Room. Why would I want her sugar to go high? What is wrong with watching the carbohydrates and sugar if she is a diabetic? Would I not do that anyway? I do not understand why I would want to make her sugar go high?

If I understand your letter, your child has been found in the past, and again now, to have significant hyperglycemia (elevated blood glucose concentrations) plus ketones in the urine in the past (but possibly now also). The child has been seen by a general family doctor PLUS an endocrinologist and you are treating the child by providing a “NO” carbohydrate diet. The measurements you provide suggest that your child is below average in height and weight and that, in addition, there is some current weight loss. You did not indicate whether the child is experiencing increased thirst or increased urination.

I strongly suspect that your child has diabetes, and at this age, it is probably type 1 diabetes that is clinically mild, at present. My guess is that there remains some uncertainty as to the child’s diagnosis on the part of the physicians, which I understand completely. Their wishing to allow a more regular diet, at present, may be to allow some “un-muddying of the water” to see if there is clearer evidence of diabetes. Another, more expensive approach, would be to perform a properly performed, formal oral glucose tolerance test (OGTT) – but as this test is often performed incorrectly in children, your healthcare team may be wishing to avoid this in your little girl. I’m also assuming that the endocrinologist involved is not a pediatric endocrinologist.

Other evidence to support whether this is typical type 1 diabetes is to measure various anti-pancreatic antibodies in the child’s blood. Such antibodies include ones called “Islet Cell Antibodies (also called IA2 or TK antibodies), GAD-65 antibodies, and possibly anti-insulin antibodies. Another type of antibody measured is sometimes called Z8 which is being assessed more often also.

You indicated that you were told that her being underweight was “because her pancreas is fighting off the fat instead of the sugar.” IF she truly has diabetes, that statement is a little bit misleading: the pancreas is not “fighting off fat” at all. In type 1 diabetes, the relative lack of insulin creates a disruption in the normal chemical balance such that glucose/sugar is unable to be used for energy metabolism (which is why the glucose level rises in the bloodstream). So, instead of glucose, the body cells turn to an “alternative” energy – fat! The metabolism (or “burning”) of fat leads to poor weight gain or even weight loss (as it is a good source of stored energy) but it also leads to the potential accumulation (and possibly fatal accumulation) of the ketones and of body acids. Together these are called “ketoacidosis” which can be accelerated by a “NO-carbohydrate” diet, which is another reason why your doctors wish to liberalize the diet a bit. The presence of functional insulin allows the efficient utilization of glucose for energy and to restore some body fat for energy and also build protein stores.

IF your child does have diabetes or a similar serious disturbance in glucose metabolism, your dietary changes alone would be along the same as those done prior to the discovery of insulin in the late 1920s, whereby affected individuals could also die of malnutrition.

If you are so uncomfortable with the physicians’ suggestions (and perhaps my answer), then I’d strongly suggest that you get a “live” second opinion with a pediatrician who can refer you to a pediatric endocrinologist.

Not all elevations in blood glucose is caused by diabetes….but it usually is.

Good luck and let us know what is learned!

DS

[Editor’s comment: In case the above answer is not clear, the doctor is saying that you need to get another opinion soon. Type 1 diabetes is NOT treated by diet; it requires insulin. Should your daughter have type 1 diabetes, you will need to find a pediatric endocrinologist to receive training in the proper administration of insulin and learn much more about caring for a child with diabetes. Given your location, you might want to consider contacting the University of Virginia’s Diabetes and Hormone Center of Excellence.

BH]