cafe au lait spots

My primary doctor was concerned with several cafet au lait spots on my son. So we are being sent to get genetic counseling next month. She wanted him evaluated for tuberous sclerosis. When I search cafet au lait spots all these possibilities came up for reasons for the spots like ( Neurofibromatosis (NF))

It's so scary. I've always noticed these spots, but just thought they were a type of birth mark. (which they could be) Read Six or more cafet au lait spots larger than 5 mm in greatest diameter is a great indication that something could be wrong. He has 2 big ones. And several ones that I think are bigger then 5 mm.

So my question is does any of your little ones have any cafet au lait spots? If so how many? Did your doctor seemed concerned about them/ did you have to get any test done? I'm just sick to my stomach thinking about this all. He seems healthy in every way. The only thing I see he is behind in is his eating. Which we did go to one food therapist appointment for.

I've tried researching about how common it is/ hear from other parents about their kids having several spots and having it to be nothing. But all I can find is parents saying that was the first sign that they had before there kid was diagnosed with something. Although some would comment that kids can just have these spots and nothing is wrong.

All I can do is wait til the appointment. But thanks to anyone that replies/ can give any feedback!

About Shannon
Birth: September 12
On since: Jun 26, 2014