Hello, I am new to this site. I have a 2 year old daughter that was just DX with PVNS. I have been looking and reading and researching everything and everywhere that I can think to find answers or to even find someone else with a 2 year old with this. I have not found anyone. Information is slim. She is in alot of pain. She had knee aspiration 3/ almost 4 weeks ago now and it seems to have gotten so much worse. No tissue biopsy was done only 10 cc blood taken out of her knee. Has anyone else had DX with out tissue biopsy? My concern is what if it is cancer, can a blood sample from knee rule cancer out? We tried to get her into Shands Hospital in Gainesville Florida, we are from the West Palm Beach Florida area. I had heard about
Dr. Carter Gibbs, I faxed him all of her records and he is referring her to Dr. Jofe in Joe Di Maggio Childrens Hospital, which his office staff said he does not treat this, I am confused why Dr. Gibss would refer her there if Jofe does not see anyone with this. We have an ortho but he does not seem to have the experience in this disease. Please please if anyone on here can give advice or direction to where we should go or what we should do or if you know of anyone that has gone thru this with a child so young please please please email me firstname.lastname@example.org
or leave me a post on here. I am given you my email because I don't want to miss anything and want to make sure I get any and all answers that anyone can please give us! Blessings!