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Swollen Lymph Node...not your average case

Swollen Lymph Node...not your average case

Please take the time to read this long winded information packed question.  My husband is military and we are stationed  overseas.  second opinions are hard to come by and I am feeling trapped with no place to go for an answer!  I have a 6 year old daughter.  Back in October she had a high fever, rash, sollen lymph nodes, sollen red strawberry tongue, slightly swollen hands, red eyes, sores on her mouth and at the edge of her nose.  They thought she might have strep but the first culture came back negative, they thought possible kawasakis disease and did a bunch of lab work, some were off but not enough to say it was kawasaki's by the labs. They continued to watched her and started leaning away from kawasaki disease and she was not treated.  She continued with on and off vomiting, bad temper and just not feeling well.  Was sent home from school several different days because "she was just not herself".  on about day 12 her hands and feet started peeling.  Classic sign of Kawasaki disease.  I was brushed off by the oncall doctor. Because Kawasakis can affect  the heart she was referred to the pediatric cardiologist.  She needed an EKG and was seen for that the day after the hand/feet peeling started.  EKG was normal.   A few days later the Echocardiogram was done and was normal.  She was diagnosed with Atypical Kawasaki disease and was started on a baby aspirin once a day.  And scheduled for a follow up Echo in 6 weeks.  At sometime in the 6 weeks she had a swollen red tongue again and was seen by her primary DR....who was going to now treat her for the Kawasaki's disease even though it was outside of the 10 day period.  When we got the the hospital and talked with the dr....it was decided to do some lab work again and go from there.  NO IVIG was given.  She seemed to get better with the exception of a large swollen lymph node on the right side of her neck.  On ultra sound it measures 2.5 by 3.7 cm.  she was put on antibiotics for about 3 weeks for lymphaditis and then scheduled for a follow up ultra sound.  The lymph node looked and felt as if it was getting smaller but when measured with ultrasound it was the same size.  So here we are today.  Almost the end of February and I am brushing my daughters hair behind her ears and feel 2 more smaller lymph nodes on the left side.  One is about the size of a Peanut M&M and the other a pea.  I feel the right side and there is another small one in addtion to the original large one.  She did have fever and sore throat about 10 days ago but no swollen lymph nodes then.  Had a Negative Strep culture AGAIN.  Does anyone have any idea on what this could be.  Like I mentioned above...My husband is military and we are stationed over seas.  Second opinions are hard to come by over here!  I need some help.  Just to mention....with the orginal illness she did have poitive EBV and CMV old infection, many negative strepthroat cultures, a positive  ASO titer (after a negative one) and her ESR was elevated several times.  An infectious disease control dr recomended the node to be removed for biopsy before the little ones showed up, we were sent to an ENT dr who does not feel that needs to be done,  He is now on leave and will not be back for a few weeks, we are set up with an appointment with the Pediatrician tomorrow.  We will see what happens from there!

Thanks for any answers or guidance that you can give!

Please ask any questions and I will be happy to answer.

I will post with updates!
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