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?