Kikuchi disease

Posted by jamiekk @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

@twin1095

Hi, my child also has Kikuchi and it breaks my heart to read this about your daughter. I would love to know how she is doing now!

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It took her almost 2 years before her symptoms were gone. Then she got mono. Her freshman and sophomore years she pretty much did homebound and a tutor from the school came 2 days per week. Her junior year she got mono the end of October and became very run down and was out of school until after Christmas. Then came CoVid and they sent her home right away due to health concerns and then all of the schools closed a short time after. This year… she is a senior. She is doing distant learning due to our concerns of "what if" she gets sick. Will it cause Kikuchi to become active again? She still has periods where she gets rundown, gets a little achy and has headaches. Where it is related to kikuchi who knows. We just hope it won't return and/or she doesn't develop lupus. We've been told her chances are a little higher because I have lupus and I just pray she doesn't get. She's had a long road and has struggled with friends because she missed soo much school and was too sick to do anything. Now we worry because she's supposed to start college next year but because of missing so much "teaching" on a daily basis her grades suffered. But I am happy to say she is a happy girl, kind, big hearted and such a good kid! She does however worry about getting sick, every time she has any symptoms of a cold she gets anxiety. Hopefully that will fade as time goes in.

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When my daughter was diagnosed with Kikuchi at the Mayo Clinic we were told there was nothing that could be done but ibuprofen and time. We were then told to follow up with her primary physician for any further issues. Her primary had never heard of Kikuchi but he read up on everything he could, he talked to the Dr at the Mayo and he treated himself. He did amazing with her and no matter how busy he was he would fit her in if she had a problem with himself or the PA in his clinic because at least he could oversee what she was doing and because 1. He cared and 2. Urgent, ER, etc. would just tell us we needed to make an appointment with him and send her home.

We laugh now at how He is an expert now. He knew nothing about but didn't give up.

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@colleenyoung

@jay723, here are some resources from reputable institutions that I found:

NIH https://rarediseases.info.nih.gov/diseases/6834/kikuchi-disease
NORD https://rarediseases.org/rare-diseases/kikuchis-disease/
Orphanet https://www.orpha.net/consor/cgi-bin/OC_Exp.php?lng=EN&Expert=50918
https://www.ncbi.nlm.nih.gov/books/NBK430830/
You're not crazy. It takes patience and persistence to find a doctor who specializes in rare diseases. Is a second opinion at Mayo Clinic an option for you? Or a major university health center?

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I have been trying to get in to see a rheumatologist, but I have Kaiser as my insurance and Kaiser rheumatologists do not see people for fibromyalgia or KFD, I have called several out of network Dr’s and no one can help me. I’m not sure what to do at this point. I live in Colorado Springs and there aren’t any good resources here I’m just at my wits end.

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@jay723

I have been trying to get in to see a rheumatologist, but I have Kaiser as my insurance and Kaiser rheumatologists do not see people for fibromyalgia or KFD, I have called several out of network Dr’s and no one can help me. I’m not sure what to do at this point. I live in Colorado Springs and there aren’t any good resources here I’m just at my wits end.

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Plain and simple
GET OUT OF KAISER.
HAVE FRIENDS AND NEIGHBORS WHO WERE WITH KAISER, AND LEFT THEM TO FIND ANSWERS TO THEIR HEALTH ISSUES.
LUCKY FOR THEM, THEY GOT THE HELP THEY NEEDED ONCE OUT OF KAISER.
GOOD HEALTH INSURANCE SHOULD BE AT THE TOP OF EVERYONES LIST.
IM NOT A BELIEVER OF “MANAGED HEALTH CARE’.
HOPE YOU FIND A GOOD DOCTOR.

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