Kikuchi-Fujimoto Disease

Posted by dloft @dloft, Jan 29, 2019

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!

Hello @dloft, welcome to Mayo Clinic Connect. I'm sorry your son has to deal with such ongoing severe pain. I can understand the helpless feelings. Thank you for being a strong advocate for your son. I'm tagging our moderator @kanaazpereira to see if we should move your post to another active discussion where you can meet other members who are discussing Kikuchi disease. You might want to read through the discussion to see what other members have shared.

Groups >Autoimmune Diseases > Kikuchi disease
https://connect.mayoclinic.org/discussion/kikuchi-disease/

I’m not sure if it is an option for you but if it is, the Mayo Clinic is very good at diagnosing and treating rare disorders that are difficult to diagnose. If you would like to seek help from Mayo Clinic, you can contact one of their appointment offices. The contact information for Minnesota, Arizona and Florida can be found here:

Mayo Clinic Contact Information: https://www.mayoclinic.org/appointments

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So sorry I must be very bad to feel so helpless and see your son suffering so badly……Beryl

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Thank you for the information! I might just contact Mayo for help. I appreciate your reply!

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Hello, I am told my child has a severe case also. How is your son doing now?

Liked by bustrbrwn22

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