Many thanks again to the posters on this board for being a great resource.
I joined a couple months back because our 6-month-old son was clinically diagnosed with NF1 (armpit/groin freckling, multiple CALM). We saw an eye doctor; there were no lisch nodules.
We did the UAB genetic test. It came back negative. Our geneticist continued to insist that our son had NF1. We told him we wanted to do a genetic test for Piebaldism, as our son also has the trademark white forelock and a hypo-pigmented spot on his knee. The doctor basically told us we were wasting our time doing the Piebaldism test, but that he would order it to placate us. (I should add that the suspicion of Piebaldism resulted from our own research; the geneticists were totally fixated on NF.)
Lo and Behold: the Piebaldism DNA test came back positive. My wife is now being tested because her 1st cousin, once removed has the exact same manifestations (but no CALM or freckling).
Thus, according to our experience, I conclude that the clinical criteria for NF1 are too general. In a few years, once the volume of genetic information increases and the CALs and freckling as phenotypes can be more easily correlated to non-NF genetic mutations, "wait and see" consultations like ours will probably be less common.
I stress again: if it is at all financially feasible for you, DO THE TESTING. It will a) help you to more accurately determine and treat your child's condition and b) in the long run, allow doctors to better diagnosis future children manifesting (today's) clinical criteria for NF1 and helping other families (maybe even yours) down this frustrating road.