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Avatar universal

IN NEED OF A DIAGNOSIS

My soon to be 4 year old daughter has had daily fevers for 4 and a half weeks now.  Temps vary from 99 to 103.5. On the onset of the disease she had rashes that would come and go and be more intense with fever (I would call them red not salmon), right now they are almost gone.  She complaints about leg and feet pain which seemed to have gotten progressively worse - she has not walked properly for the past two weeks. SED rate and CRP are both very high. She is very anemic with iron levels dropping over the period. She was hospitalized for almost 3 weeks where she got treatment for Rocky Mountain Spotted Fever and Kawasaki disease which were both ruled out after treatment. Diskitis is out as well thru an MRI, bone marrow was normal.
Her pediatrician thinks she has some kind of Juvenile Arthritis but two Rheumatologists (one from Wake Forest the other from Duke) do not think that's what she has. In the meantime the fever keeps going and unless she takes ibuprofen she will just lay in bed moaning and complaining.  Even with the medicine she still does not walk. We are ready for the disease to either go away to never come back (best case) or for a doctor to give us a diagnosis and a treatment that makes our little star better.  I know this is all very generic but is there anyone in this community with clues to our puzzle?
We appreciate any suggestions at this point
2 Responses
Avatar universal
We spent the day at UNC Chapel Hill with a lot of blood work but doctors (ID, Rheumatologist, and Diagnosis Specialist) gave us a diagnosis of Systemic Juvenile Rheumatoid Arthritis and we are starting treatment with steroids tonight.  Doctors expect her to improve within 3 days. We are keeping our fingers crossed.
Avatar universal
I can feel so bad for you. You are going thru what my Mom and Dad went thru with me when I was 5 yrs old I had a fever of 108 degrees my Dad called an ambulance and i was taken to the hospital the doc there told my parents to say Good bye to me because all of my organs were about to shut down My father held the doc up with one hand on his throat and ordered him to give me a blood transfusion, this was in the 5os when I was diagnosed with Juvenille  rhematoid arthritus I ve lived with it for 50yrs now 3 hip replacements 2 shoulders i knee and they want to do the other knee. I will pray for you and your child just remember your not alone Just love and support her as much as you can Give her lots of ecouragement and attention good luck and may God bless you and stay with you always
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