My son (13)was diagnosed with this a couple of months ago. We noticed it because he had this large "lump" on the side of his leg. It is about 4 inches above the ankle. The xrays showed a 2"x1" growth on his tibia pushing against his fibula, which is now bent(this is what was causing the "lump"). We took him to a ped ortho dr who said to do nothing!... more