Personally, I have a daughter who has neurofibromatosis and she is only 4 years old.  She was diagnosed when she was only a few months old, and has had the café-au-lait marks on her body since she was just a few weeks old.  While my personal experience so far has been relatively painless, there have been some times where I was very scared and did not know where to turn.  Most of the information that is out and available is written with huge long words that when your busy freaking out makes no sense at all. 

When I am doing an inspection of my child’s body before bedtime and it’s late I do not want to dig through an article that has most technical information that I have to look up the terminology for to even start to calm down.  The idea of doing research into the technical terms is never a good idea; I am too busy worrying about my child to start digging deeper into medical books and terminology.

I only have to take our daughter to the pediatrician once a year, for a normal routine checkup, which usually involves me pointing out the spots and how they have changed.  Aside from her normal checkups I have to go and take her to a genetic doctor once a year, the genetic doctor simply checks her spots, blood work and does a good work up to ensure that she is not having any problems.  Once a year I also take her to a special ophthalmologist who specializes in NF patience as well as pediatrics so her doctors are all very good. 

So far, the checkups have all been very boring and uneventful with no medical problems at all discovered.  My daughter has contracted NF from her father who also has the genetic disorder.  He also has no problems with his NF, and has only had to have one tumor removed from his back.  With her father also having NF, it helps to keep me calm when I discover a new café-au-lait spot.  I would never recommend allowing your child to go untreated and unmonitored if you are aware they have NF.