In Need of a diagnosis - 4yr old with fever for over 4 weeks

[Starwishes]

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

[Starwishes]

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.

[PlateletGal]

It will be a new forum that will appear (the magic of these computer wizards behind the scenes at MedHelp !). I will definitely post the information as soon as I hear back from MedHelp.

The physician answering questions is Prof. Garth Nicolson. Dr. Nicolson is the founder of The Institute for Molecular Medicine. I have posted several of his links in the lyme health pages. He has given many presentations around the country on not only on lyme disease, but CFS, autism and other illnesses.


About Dr. Nicolson: http://www.immed.org/reachus.htm

[SOONERMOM]

What is the name of the forum this will be in?

[PlateletGal]

I thought I would let you know that we will be having a physician in MedHelp this Wednesday from 12:00 - 1:00 PM. (PACIFIC TIME).  He is an expert on the role infections play in chronic illnesses and may have some ideas for you. I hope you will consider joining the session. I think MedHelp is going to open a special forum for him and you can post your questions in advance.

I will post a notice with all of the info as soon as I get it.

In the meantime, you & your daughter are in my thoughts/prayers.

[SOONERMOM]

I am SO SORRY you and your daughter are having to go through this!  You just keep at them until they figure this out!  I would bet that if it does "go away", they will tell you it was viral.  I would say that with the fever it is infectious.  Do you know what she was tested for?  Did she see ANY improvement with the treatment for RMSF?  At her age, they wouldn't give her doxycycline, do you know what they gave her?

Is there any chance of a tick bite?  There are many other things that a tick can transmit in addition to lyme disease.  Babesia lives inside RBC's, so it could cause anemia.  Bartonella can cause shin and foot pain.  I am sure there could be other explanations as well.

Always get copies of test results for yourself.   I really hope that this appointment on Tuesday and/or Thursday will give you some answers and the doctor is able to help your daughter.  

We will keep your family in our prayers and thoughts and keep us updated!

Stacey

[Starwishes]

Thank you Jackie.

ID doctors were in charge of her care while she stayed at Wake Forest's hospital for 2 weeks.  They took a team approach and based on conversations we had with doctors from other hospitals they're doing what they are suppose to.  It's just very frustrating that no one can find out what she has.  On Tuesday we are seeing a UNC Chapel Hill pediatrician who specializes in difficult cases.  We were told she will have an ID doctor with her.  On Thursday we are seeing the ID doctor at Duke. We are hoping someone can figure it out and start treatment.  Right now we are just focused in managing her symptoms.

[JackieCalifornia]

So sorry to hear about your child.  What about a consultation with an infectious disease (ID) doctor?  Sometimes they like to specialize in certain diseases, but someone who has a broad practice in ID might be able to piece things together.

Comments I have heard about rheumatologists generally are that they have a rather narrow specialty and so aren't accustomed to looking at a broad field like ID.  Perhaps the rheumatologists from Duke and Wake Forest could get you a quick referral to an ID dr at their medical schools.

Best wishes to you and your little one.