Our story is, I believe, almost perfectly typical of a classical T1D Diagnosis.
Right about when my son turned 11, his behavior started changing. From being always full of energy, he started napping after school. He became less interested in extra-curricular activities.He would eat ravenously at every meal – more than anyone of us, including his strapping 17-year-old brother, and drink like a storm drain. Interestingly, he had always woken up multiple times per night to pee, so that part of him didn’t change.
His change in behavior worried my wife and me badly enough that we actually met with his teacher, to discuss if there was an issue in school that might have caused a problem. But nothing came out.
Then, one day, he got an ear infection. We took him to a nurse clinic, who prescribed antibiotics. A couple of days later he started losing weight. Ater four days, he had lost 10 lbs, and we became worried. Exactly a week after he had started this ear infection, we took him to a pediatrician – unfortunately not his pediatrician, as she was not in that day. The pediatrician felt that it was an antibiotic issue, changed his antibiotic, and warned me that it would take two days before it started working – so I should not panic for 2 days. That day, he lost 3 more pounds and became quite apathetic, barely able to drag himself to the bathroom, and responding to us by monosyllables.
The next morning, he had lost two more pounds and was 15 lbs down his original weight. My wife had a look at him that morning and told me: “we are losing him.” Stupidly, I replied that we needed an extra day before the antibiotics would start working. When you looked at the boy, the skin on his face was stretched over his bones – you could see his skeleton underneath the skin. His eyes were starting to bulge out of their orbits – they looked like Marty Feldman’s in Young Frankenstein. I realized then that, possibly, he was seriously affected by something. I still had no idea what it was.
After all that, I still took him to the pediatrician – the same one who had told me to wait a couple of days before worrying. When we came out of the car, my son was dragging himself and using my shoulder to get up straight, so the hospital valet asked us if he needed a wheelchair – I was rather annoyed with my son, as I felt that he was just not pulling his weight – but my wife accepted the chair. In fact, he was close to being in a coma at the time.
The pediatrician listened to him for a minute (he was breathing strongly and loudly – Kussmaul breathing, a characteristic sign of in-extremis diabetes), and told me that she needed to check his BG. He came out with a reading of 500. That is when she told me that he was likely diabetic, and sent me straight to the emergency room.
I made my last mistake of the week and decided to take him to the closest emergency room, which I knew would not have a long wait time, instead of taking him to the nearest Children’s Hospital. When we got there, they admitted him, then told us that they would transfer him to Children’s by ambulance, because Children’s was much better equipped than them in dealing with pediatric diabetics and that he was too far gone to go there in our own car. This ambulance ride, of course, cost us a few thousand dollars more 
We found out that he was in severe diabetic ketoacidosis (DKA), a word whose meaning we did not know at the time. His A1c was 12.5% – so he obviously had been a diabetic for several months already.
Some points that I note every time I replay the story of his diagnosis in my head:
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I cannot believe that we did not diagnose him months before – he had many typical signs. The primary reason I did not think of it was that I knew T1 was genetic – I thought it meant you had to have a T1 in the family. I never realized that 9 kids out of 10 get diagnosed without a T1 in their ascendance.
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Even though I always say that I consider a doctor an advisor, not a decision-maker, I still made the decision to accept the pediatrician’s opinion that this could wait another two days, although my son had already lost 10 lbs in a few days.
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Even though I could see my son dying in front of my eyes the next day, I was still following the doctor’s opinion that we needed to wait an extra day before worrying. He would likely have been dead before that, had my wife not realized what I was too dense to see.
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Pediatric diabetics in DKA are in a severe emergency, that sometimes results in death, and that a normal hospital emergency room is not equipped to deal with well. This is one more thing I did not know.
I often think back at the many mistakes I made. I normally think of myself as a good decision maker – but my chain of errors in judgment would have caused the death of my son, had my wife not seen the light. This has caused me to become much more weary in my judgment when considering the many decisions we make every day about diabetes management – probably for the better.
