9 yr old has Excruciating Knee pain! Where do we go now?

mcanada,

Sorry to hear about your son's problems.

A RF of 128 is considered elevated. Depending upon the lab, a normal value is considered below 20-60IU/ml or a titer below 1:40 to 1:80

Rheumatoid factor may also be elevated in: chronic hepatitis, primary biliary cirrhosis, any chronic viral infection, bacterial endocarditis, leukemia, dermatomyositis, infectious mononucleosis, systemic sclerosis, systemic lupus erythematosus (SLE), epstein-Barr virus (EBV), and parvovirus.

There is no association of rheumatoid factor with the level of disease activity.

Also, even if he does have JRA, it is waxing and waning disease. In the active phases, other labs will be positive. Labs which show active inflammation are the ESR (erythrocyte sedimentation rate) and CRP (C reative protein), and if they are not elevated, then there is no active inflammation.


Your son has had the "million dollar work-up", so the good thing is, that things like cancer, sarcomas, and trauma have been ruled out.


No matter what your son is finally diagnosed with, it unfortunately may be a life long problem. And it is not a fun thing to have significant pain. But, it is a thing that he may have to learn to deal with. It is terrible to be so young, and have to deal with a significant problem.

Unfortunately, it sounds like he has been treated with the biggest guns in terms of medication. He is going to have to learn alternative methods of pain control, which often require life style changes. This can be hard on the family as well. But, there are a lot of things that can be done, but the results are often tempered by the patient's attitude. There is no magic pill or magic treatment to make things all better, unfortunately. But, there are many children out there dealing with very similar problems every day.


You might ask your pediatrician if there are any pain management specialists in your area that take care of children. Because, again, if he does have JRA or some other chronic condition, it is going to be lifelong.

But, JRA, even in its acute inflammatory stages, usually does not cause the type of pain you describe. It may be that your son has an abnormal reaction to pain stimulus. This is, again, something that needs to be worked up by a pain specialist. It may be that he can undergo desensitization treatments. But, that is a question for a specialist.


Hope you find the answers you are seeking and that you son does better very soon.

Good luck.

Thank you Gaelic for the detailed response. I would mention that they did test the ESR (erythrocyte sedimentation rate) and it came back as 6. This tells me that there is little or no inflammation.

We will look into the pain management specialist. That seems about the only thing we can do until we can get to an RA specialist for further testing.

Do you think this could have anything to do with the flu shot he had about a week prior to this starting?

Mark