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jamiekk
@jamiekk

Posts: 1
Joined: Dec 09, 2017

Kikuchi disease

Posted by @jamiekk, Dec 9, 2017

Has anyone been diagnosed with this disease? My 30 year old son has been but there is so little information on it and the Drs he has seen it’s the first time they have heard of it. He had it in his neck in February 2017 it was removed and he got better. Now he has a softball size lymph node in his abdomen that the Drs think might be kikuchi disease again. They are doing a biopsy next week but the problem is they aren’t sure if they will be able to get enough to tell. Surgery to remove is risky because it is behind all of his organs. I’m a very worried frustrated mother! If anyone has info that might be helpful to us PLEASE reply! Thanks so much

REPLY

Hello Jamie (@jamiekk), welcome to Mayo Connect. I’m glad you found us. I can understand the worry and frustration of not knowing when there is not a lot of information available. I’m hoping we can get some helpful suggestions for you. I am tagging several members who have discussed Kikuchi disease to see if they can offer some suggestions. @bvanlaan, @twood412, @kelseydm, @kanaazpereira can you provide any information or suggestions for @jamiekk ?

Jamie, @kelseydm has a post here with a good suggestion:
https://connect.mayoclinic.org/comment/28830/bookmark/?ajax_hook=action&_wpnonce=d65d6508d4

If possible, can you keep us updated on any progress?

Thank you for being a strong advocate for your son. I think you have found the right place to search for answers.

John

Hi Jamie. I was diagnosed with KFD about 5 years ago. I’d love to chat with you.

@twood412

Hi Jamie. I was diagnosed with KFD about 5 years ago. I’d love to chat with you.

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Hi @twood412 – Just a suggestion to keep your email safe… It’s easy to send a private message to a Connect member. Just click on the username (@xxxxxx) and it will take you to their profile. Then click the Send Private Message link in their profile description. You can always exchange emails in a private message if you want.

John

@twood412

Hi Jamie. I was diagnosed with KFD about 5 years ago. I’d love to chat with you.

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Thanks John, will do! Could you tell me how to remove the previous message? I no longer have an option to edit it. Thanks!

@twood412

Hi Jamie. I was diagnosed with KFD about 5 years ago. I’d love to chat with you.

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Hi @twood412 , looks like one of our moderators removed the email address for you. We try and watch for this to protect our members. If you discuss any helpful information that would benefit others with Kikuchi disease in your private message, would you consider posting it here in this discussion. It can really help others in the same situation.

Thank you,
John

@twood412

Hi Jamie. I was diagnosed with KFD about 5 years ago. I’d love to chat with you.

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I’d be happy to. The single most important thing I can mention is that almost 4 years after my KFD diagnosis, I was diagnosed with late stage neuroborelliosis (chronic Lyme and co’s) which my doctors believe to be the cause of my KFD flare 5 years ago.

@twood412

Hi Jamie. I was diagnosed with KFD about 5 years ago. I’d love to chat with you.

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Hi @twood412,

First, thank you so much for answering John’s tag – I’m certain @jamiekk appreciates it too, and we are thrilled to see you return to Connect! You will notice that I deleted your email address. As @johnbishop mentioned, posts to the discussion board are public, and we don’t want you getting unwanted spam etc. We recommend sharing personal contact information by private message as it is a secure, private option. Thank you for understanding.

@jamiekk, although these two studies were published in 2006 and 2011 respectively, I thought you might wish to read them:
– Successful treatment of severe Kikuchi’s disease with intravenous immunoglobulin:
https://academic.oup.com/rheumatology/article/45/2/235/2899313
– Management of Kikuchi-Fujimoto Disease Using Glucocorticoid:
https://www.hindawi.com/journals/crim/2011/230840/

Jamie, you mentioned, “…the Drs he has seen it’s the first time they have heard of it.” Have you thought about seeking a second opinion?

My 15 year old daughter was diagnosed February 2nd 2018. She started having problems first part of October 2017 and was hospitalized for 4 days with a “blocked salivary gland” and cellulitis. From that point forward she started having enlarged lymph nodes in her neck then multiple in her armpit on the opposite side. Her WBC count bounced a lot from normal to 3.4 same with her hemoglobin. She was seen in 2 different ER’s many times. All saying something was wrong but they didn’t know what… and then sent her home. Beginning of January she started running temps of 103-104.2 several days in a row then break then start again 2-3 days later. Early January she was diagnosed with viral encephalitis. High temps, severe headaches and the temps continued. From the beginning of January to end of January symptoms continued to get worse. January 22nd we rushed her to ER. She was screaming in pain, 104.2 temp, she had rigors and was shaking so hard. Her fever broke there and once again the sent her home. The next day her primary physician, wonderful Dr!, saw her. WNC count was 2.4 hemoglobin was 8.1, she was a grayish translucent color, she was struggling to even walk. Dr was concerned that with the significant drop on her blood counts she may have leukemia. He ran a bunch of tests. By Wednesday she was looking worse. Her Dr had us drive to St Mary’s hospital in Rochester. After a few days she stablized but the lumps in her armpit were getting larger and more painful. The Dr in Rochester somehow came across Kikuchi. She had about every symptom to the Nth degree!! A biopsy was done see if she had Kikuchi, lymphoma or something else. They remove the 2 largest lymph nodes and the biopsy came back it was Kikuchi without a doubt. Since the her fevers haven’t went over 102 and rarely has a fever, body aches lessened blood counts were going up. She had enlarged lymph nodes in her, more CT scans, luckily they appear to be Kikuchi. She went on minocycline (acne medication- I had read that it was tried in a patient.) within 5 days everything cleared up and she was finally feeling better but once the medication was stopped slowly symptoms started coming back. She continues to have problems with body aches, headaches, fatigue, loss of appetite and a few enlarged lymph nodes that were not big. Right before Christmas she had a lump under her chin. CT was done immediately… again appears to be nothin to worry about but her WBC count had dropped to 2.2 with no explaination. A couple weeks later is was 2.4 or 2,6, a couple more weeks it was 3.2. She has little to no energy. She has not had even 1 normal WBC count since early October 2017.

Her Dr is not sure that it is still Kikuchi because in every “study” or report… which there are not very many, it says 1-4 months, sometimes 6 months and rarely a year. This poor girl now 16 has missed 16 months of her life, a whole year of school.

I am not sure what to do! Every time we think things are over… some symptom(s) pop up and she is down 3-5 days and slow going for another 3-5 days. Just 1 week ago she was home from school 2 1/2 days and still feeling the effects of whatever is going on. She cries regularly because she is scared it will get really bad again and she just die understand why she just can’t feel “normal”.

Is there a chance that she STILL has Kikuchi 16 months later?? Do we need to start looking for something else to be wrong?

Hello @gretchenv15, welcome to Mayo Clinic Connect. You mentioned that her doctor is not sure it is still Kikuchi. Is it the same doctor in Rochester that diagnosed your daughter? If not, it might be a good idea to contact the doctor and ask them what the next step is for a treatment plan. @bvanlaan, @twood412, @kelseydm, @kanaazpereira might be able to offer some insight or suggestions to help.

Hope you find some answers soon.

@johnbishop

Hello @gretchenv15, welcome to Mayo Clinic Connect. You mentioned that her doctor is not sure it is still Kikuchi. Is it the same doctor in Rochester that diagnosed your daughter? If not, it might be a good idea to contact the doctor and ask them what the next step is for a treatment plan. @bvanlaan, @twood412, @kelseydm, @kanaazpereira might be able to offer some insight or suggestions to help.

Hope you find some answers soon.

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Thank you!! After her surgery January 2018 the aft at Rochester said her primary Dr could follow her. Her primary is great with her and has done a lot of research but doesn’t have any clear answer. I will call the Dr she had at the Mayo and see what he wants us to do. I will reach out to the people mentioned in your reply.

Hello @gretchenv15

I am so sorry to hear of your daughter's continued problems with this disorder. I can understand your concern and I appreciate your reaching out to seek answers! I am glad to hear that you will be following up with the doctor in Rochester who originally diagnosed your daughter. This sounds like a very good plan.

While I'm sure you know a lot about Kikuchi Disease already, I did a little research and found some information on a rare diseases website. You probably already know most of the information, but thought it might be of interest to you. Just click on the link to read the article,
https://rarediseases.info.nih.gov/diseases/6834/kikuchi-disease

I look forward to hearing from you again. Will you post again and let me know how you are doing as you seek for answers?

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