I originally took my five-year-old in to his doctor because he’s been getting very frequent headaches, has been drinking a ton of water, has been abnormally clumsy and moody. He ranges from 39 to 42 pounds.

His doctor was concerned that he may have diabetes so she ordered some blood tests. His blood sugar came back low at 53 mg/dl [2.9 mmol/L] and his creatinine to bun level was 53.3. I talked to her after she was able to review his tests and she said she thinks he has diabetes. She prescribed him a glucose monitor and ordered a 2 hour glucose test. We went in for the glucose test and the laboratory at the hospital informed her they were not comfortable doing this testing on someone so young. She told us to go home and monitor his blood sugars at home and that she would be referring us to a specialist.

So far, his blood sugar has ranged from 60 to 162 mg/dl [3.3 to 9 mmol/L]. Honestly, I’m not 100% sure on what I’m looking for. I wasn’t given any other instructions other that to “monitor” it and report back to her on Tuesday when she is back in the office.
Are those ranges of blood sugar normal? Do they go too high or too low?

I’m really concerned and feeling very, very lost and I am hoping for more information on the matter.

Those symptoms are definitely abnormal. Excess thirst is usually associated with excess urination and high blood glucose levels over 200 mg/dl [11.1 mmol/L]. The single low blood sugar was a bit low and you indicated some others in the 60s mg/dl [2.9 to 3.9 mmol/L] range which also are too low, so hypoglycemia, low blood sugar, could also be occurring although this is pretty rare at onset of new diabetes where the symptoms are from high, not low sugars. Some of the values you report, up to 162 mg/dl [9 mmol/L] are high-ish, too.

The key is to check weight daily and pay close attention to providing enough fluids so that he does not get dehydrated. I would agree you should be evaluated by a pediatric endocrinologist specializing in childhood diabetes. If none available where you are in Alaska, you may want to consider an adult diabetologist or make arrangement to go to a bigger city where there may be some pediatric endocrine specialists to consult.

Key tests, which you did not mention, are an A1c which tells you something about average sugar levels the past two to three months, so the higher, the more worrisome. If he is having hypoglycemia, then the A1c might be too low or low-normal. Blood salt levels (sodium, potassium, bicarbonate, chloride) also should be checked and the kidney functions rechecked including blood and urinalysis. Either blood or urine ketone levels also need to be checked. With higher sugars, pancreas antibody levels for islet cell, insulin, IA2, GAD-65 and ZnT8 would give you information about any inflammatory changes that commonly are associated with classical type 1 diabetes in kids.

Important for now is to keep track of daily weight, several blood sugar readings before and 1 to 2 hours after meals and snacks and to report back to your doctor if the blood sugar levels are rising, not getting better, or even if they are actually below 69 mg/dl [3.9 mmol/L], too.