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October 19, 2008

Diagnosis and Symptoms

Question from Shawnee, Kansas, USA:

My seven-year old son has had spikes of high blood sugar for the past year and a half of monitoring. We actually noticed his mood swings, zoned out behavior, and demand for food and drinks since he was young. He is underweight for his age and average height. He typically spikes at 200 mg/dl [11.1 mmol/L] to 300 mg/dl [16.7 mmol/L] two hours after meals. It is typical for him to go to bed at night with a sugar reading of 200 mg/dl [11.1 mmol/L] or more. Yes, my monitor has been checked against the hospital monitor, so it is accurate! We have seen several endocrinologists that tell me I should be concerned, but provide no answers for why he is having spikes in his blood sugar. My son tested negative for MODY. His highest spike was 380 mg/dl [21.1 mmol/L]. When high like this, he is in a "zone" where he won't talk or respond. Afterwards, he tells me he can't respond to me. The doctor has now suggested an EEG to check for seizures. My son only shows signs of hyperglycemia and not hypoglycemia. In the past six months, his eyesight has gotten worse. He has had glasses for a year. Now, he is indicating low frequency hearing loss. He also has dry skin and odd rashes all the time. It is hard for me to believe all of these things are not contacted. Basically, the doctors give me no explanation and are stumped. Meanwhile, I am wondering about the damage or toll it is taking on my son's body. He is eating and drinking CONSTANTLY. He passed the three hour glucose test. It seems like he doesn't stay spiked up long enough for it to show up on an A1c. It is hard for me to continue put him through testing with no answers. I did have gestational diabetes when I was pregnant with him. He was 10 pounds at birth. Is there a connection? Is this pre-diabetes? One doctor told me it is not diabetes and another doctor told me it might be diabetes. What do you suggest we do to get an answer to his problems?


While your letter describes a concerning set of information, I am a little confused.

You indicate that you have repeatedly checked your child’s glucose values from blood and find high values. Apparently, these high values have been confirmed “against a hospital monitor.” Why did you start checking? Where did you get the glucose meter? Who calibrated it for you? How? Has the child’s blood sample (from a vein stick, analyzed in the hospital laboratory, not a finger stick done by another meter in the Emergency Room, for example), been done? You have seen endocrinologists. Have they been pediatric endocrinologists who are (hopefully) more in tune with the nuances of diabetes in children?

I have to tell you that I would find it really hard to diagnose your child with diabetes mellitus in light of a “normal” glucose tolerance test. Was it a properly performed formal glucose tolerance test? Please read about the Diagnosis of Diabetes and how an OGTT is performed properly.

So, I can only imagine your frustration and probably that of your doctors.

Your child has always had a high demand for food and drinks. Is he urinating a lot? Does he have any other symptoms of diabetes, such as weight loss? The behavior issues and skin changes you describe are not at all typical of diabetes mellitus.

Let’s approach this a slightly different way: let’s ASSUME FOR THE MOMENT, that your son does actually have diabetes. IF the A1c were NORMAL, then the diabetes must be in excellent control because the A1c reflects the overall glucose over the past 10 or so weeks. So, even if there are glucose spikes, overall, his sugars are terrific (thus the normal A1c) and so, I wouldn’t worry that the spikes, PER SE, are causing any long term “toll” on the boy.

Nevertheless, the combination of vision changes, behavior changes, questionable hearing changes, constant hunger and thirst are bothersome. Is your child obese? Is there sleep apnea? Given these issues, which are controlled by the brain, I agree with your seeing a neurologist and perhaps consideration for an MRI of the hypothalamic region of the brain.

There is a RARE condition that has the odd combination of diabetes mellitus (sugar diabetes), diabetes insipidus (disorder of water balance), vision changes, hearing changes, and other neurologic issues. The vision changes are associated with a some “degeneration” or “atrophy” of the eye nerve. This could only be appreciated by a pediatric ophthalmologist (NOT optometrist) who was looking for it. But, in this condition, the hearing issue generally does not occur so early in life and the affected person CLEARLY has diabetes mellitus, which is not definite in your son.

I’d discuss with your pediatrician and your pediatric endocrinologist considering a confirmatory proper (correct preparation, glucose load, obtaining proper samples for glucose and insulin, done by a laboratory and not by fingerstick) OGTT. I’d talk with the neurologist about the merits of an MRI. I’d have your child seen by a pediatric ophthalmologist to look for, among other things, atrophy to the optic nerve. If there are hearing issues, I’d have you see an audiologist for proper testing. Goofy skin rashes? Common things happen commonly. Have you seen a dermatologist?

I agree there seems to be a problem here, but your diverse and conflicting symptom description sounds complex. While I do not typically like having patients go “doctor-to-doctor,” for the time being, you will have to attack and verify each symptom separately.

Let us know what you learn.