I phoned the pediatrician and told her about the ketosis, and suddenly she became interested. We finally have a physical symptom, something that can be measured, and she doesn't understand it. She has four years of data, and she knows he's not diabetic, so she has no explanation. The scientist in her is curious.
Finally, Finally, Finally, she is going to help us find the cause. We're not going to prescribe psychotropics for the rest of John's life, we're going to figure it out!
She spent two weeks doing some research, lining up a series of tests that she thought would shed some light on the subject. She prescribed them all in one go, so that the lab tech could draw blood just once. It's a good thing too - John was hysterical with fear. Wendy and the tech had to hold him down while she filled 11 vials with blood. Some of these tests had to be sent to the Mayo clinic, so we had to sit back and wait. Meantime, I could run a few tests of my own.
One night John was ketotic again, and aggressive and defiant and irrational and hyperactive, and all the behaviors that go with it. This time I was prepared. We bought some ketos test sticks from the local drugstore. We took out a fresh stick, exposed it to John's urine, and, nothing! No glucose, no acetoacetic acid. He smells ketotic, but he's not. Not in the usual sense. This is not a derailed Krebb's cycle, as I suspected. No ketone body in the urine. But it smells just like Wendy. I am faced with nothing but contradictions.
A week goes by, and John tells me it really hurts when he urinates. Now this is the proof I've been looking for! I mean, young boys don't get bladder infections. They just don't. It has to be the bacteria inside, spilling out into his urine. Nobody believes my bacterial theory, but now I have proof. I capture the urine in a container and put it in the fridge. The next day we take it into the doctors. Well not quite - we have to make an appointment and take John too, even though he's been in thrice in the last month. Doctors have their protocol, and you just can't change it. So we sit in the waiting room and wait - then we see the doctor. She checks the urine that we obtained last night. PH is normal, and no bacteria. "No problem here." she declares with a smile.
Something is terribly wrong with my son, something that will eventually kill him if it isn't corrected, and there is no lab test that can confirm it, or diagnose it. I go home more depressed than I've been in a long time.