we think my daughter has cidp ( 12 years old)

My daughter (12 yo) has numbness and tingling progressing up both legs ( never her fingers or arms) the highest it went was mid thigh. this was in aug 2006. we were admitted to the hospital and underwent lumbar puncture as well as ct and mri ( trying to rule all sorts of things out) she was discharged a week later on crutches when the numbness and tingling went down to the top of her knees. after a while it went down to the base of her knees and she was able to walk unassisted X 3 weeks. then it went up again and since then has stayed the same (unable to walk w/o crutches since. we went thru the ivig infusion 3 weeks ago with no improvement. Prior to the infusion she started having searing pain up both legs and was put on neurontin and ultram now the doctor wants to refer us to ucsf for a possible nerve biopsy.( he also changed her meds to neurontin and oxycodone because the pain was keeping her up at night) anyone have any comments for us. Both my husband and I are registered nurses, but this ordeal is excruciating because we have no clue if /when she will recover or show some sign of improvement.