Neurofibromatosis

[livingwith]

My 5 year old grandson was recently diagnosed with NF1. He has many cafe au lait spots on his tummy & back and also a small tumor like swelling on his index finger which makes it appear distorted. He sometimes repeats himself when talking but is highly intelligent and has done well in pre-school. He is under the care of a neurologist and will have MRI & eye exams periodically. We are so worried for him and our hearts ache. Has anyone outthere only had cafe au lait spots and nothing ...Read the full article