My daughter is diagnosed with Crmo osteomyelitis but nothing was really explained to me

From a parent of a six yr old girl who has just been diagnosed with crmo osteomyelitis. She started off with a limp last summer with a sore foot  we brought her to doctor twice but said it could be that she has grown so much in a short space of time. In November she had a lump on her neck in which the doctor said it was an inflammed joint, we went again in January and doctor referred us to a specialist who had xrays and ultrasound done,in this time the lump is getting bigger went back and was referred to Crumlins children hospital where mri and cat scans done along with bloods and scull xrays. It was when all there tests were carried that they made the diagnosis. I'm a bit concerned as nothing was really explained to me and I only know from what I'm reading.  she is being referred to a rheumatologist but was told it could be a while and to give her nurofen until then. I am concerned that her condition could worsen, Should I be concerned and does the condition get worse, but nurofen does ease her pain away. Any knowledge on this would be greatly appreciated 

Many thanks in advance