It sounds as if your child's blood sugar levels fluctuate more than normal, but that doctors aren't labeling him as diabetic because his sugar levels DO drop below normal, which never happens once a person becomes diabetic -- once diabetes is the real diagnosis, the glucose levels are always high until treated with insulin or oral meds (depending on whether the person is type 1 or type 2).
So I suspect that the reason you get different answers is because your son is fluctuating between diabetic-high levels and hypoglycemic-low levels, and therefore does not fit a typical diagnosis. Doctors can't treat with meds as long as the child is producing enough insulin to go low at times. So really all you can do is to watch his patterns and see if you can figure out what triggers highs and what triggers lows. There may be certain foods that cause either extreme. I would suggest that you may want to look at any dietary tips offered on the www.hypoglycemia.org website, for a diet that helps prevent hypoglycemia is more than likely to help avoid the highs, too. Foods that digest slowly instead of having a high glycemic index may be the best help for your child to help level off the glucose numbers. I would suggest that you look closely at whether the child has any allergies, too, for they can wreck havoc on glucose levels.
I would agree with you that it is not OK for his blood sugar to be fluctuating this wildly, but until they either stay high or stay low a lot, there probably isn't a whole lot that doctors can do. But as a parent, you can try to give more carbs when the child is low, and maybe less carbs when the child is high to try to help his body normalize his own levels. And I suspect that you are wise to keep an eye out on his levels, for he may someday go fully to one extreme or another. Most doctors look more at what the AVERAGE glucose level is rather than the level at one specific time or another. Many normal people have levels that elevate shortly after meals and as long as they drop of their own accord within a short period of time, most doctors consider that their pancreas is working fine. Levels for healthy people do go out of that normal 70-100 range after they eat meals, although ideally not quite up to 190. But I can see how his doctors may not be concerned as long as the body is able to lower the 190 to normal within a couple of hours without medical help.
That makes sense to a point. The other thing I don't understand is I have been told that Type1 diabetes is a "one minute you're fine and the next you're diabetic" disease. That seems to be why they don't want to look any more into my sons issues. But from what I've read and from people I know whose kids are diabetic it can happen over quite a length of time before it gets severe enough to be diagnosed. So I'm really wondering which it is. Is my son on his way, so to speak, to becoming diabetic?
Diabetes is believed to be a disease that develops over a period of time, but that's not known for sure. Since we don't know what causes it, it's very difficuly to figure out how long it takes to develop.
It's hard to say whether or not your son is on his way to developing type 1 diabetes. There is a screening that can be done to look for specific anti-bodies in his blood which would indicate he is pre-diabetic.