When my daughter was born it wasn't until she was about 2 weeks old I noticed she had a ''birth mark'' on her thigh. Then she started to develop more and more spots as the months went by. When she was around 10 months old she was diagnosed with NF1. Everything was fine until she was 2 1/2 and she started getting headaches. At first she only had a headache about once a week. I thought maybe she was fighting a cold/flu or something. I didn't start to get worried until she started getting the headaches nearly everyday and would cry and make me lay with her with my hand over her eyes. Her behaviour became terrible! She became very moody, barely sleeping at night. It became normal for her to go to bed and wake up a few ours later and be awake from midnight till 7 in the morning with headaches. Finally she had an MRI done just before her 3rd birthday which showed she had a mass of tumours ( optic nerve glioma) behind her right eye. The doctors were unsure as to why she was having headaches as her tumours weren't creating them. The put her on Prizotifin which helped her head aches. She started on chemo straight away. Her vision was fine at the time as far as we knew but started to disintegrate in her right eye after a few months after chemo had started. The doctors were worried that her vision loss might be due to the chemo she was on. Her tumours had shrunk a lot after 7 months of treatment so she was taken off the drugs to see if her vision got any better. She had eye exams every month and MRI scans every 3 months. Her vision has stayed the same since being off the chemo. The scans were showing that the tumours were not changing in anyway until her last MRI a month ago. It showed she has another tumour along her right optic nerve that has started to grow. We're now waiting to hear in the beginning of July if she will need to start the chemo again. As much as we don't want her to have to have chemo, we also don't want the tumours to grow anymore than they are. She was off all medication for several months including her Prizotifin. She hadn't complained of headaches until the last few weeks. I mentioned it to her oncologist who has now put her back on the Prizotifin and has told us to bring her in if she is in terrible pain with a headache as the tumours are not the cause and she would need an emergancy CAT scan to see if it is fluid causing pressure on her brain as that can happen with NF1 patients. I am new to this web sight and find it comforting to see we are not alone with this. It sure feels like it sometimes. All the best to all of you out there battling this scary disease.