Kikuchi-Fujimoto Disease

My 11 year old son was diagnosed with Kikuchi-Fujimoto disease back in October after a 2 1/2 week stay in the hospital. His form of the disease is in his abdomen and was confirmed by doing a lymph node biopsy. He was treated with high dose steroids for two weeks and began to do better for a few weeks until his pain came back. He was admitted again and it was found that his disease had spread from the right side of his abdomen to the middle. He was started on steroids again and has been on them for 6 1/2 weeks now with no improvement and he is actually getting worse. He is being weaned off of them very slowly and has 6 more weeks left of the steroids. He is continuing to get worse and his current rheumatologist just told me last week that he doesn’t need to see my son again for 3 months.

My son has severe pain in his abdomen, is constantly nauseous and says his pain is getting even worse. We are going on almost 4 months of him being sick and in pain. I have been told by his rheumatologist he has a severe case. Is there anyone else out there that has experienced abdominal Kikuchi? I’m feeling quite helpless at this point. I’m also looking to find a new doctor to see him. Any help or advice is greatly appreciated!