My son who is 9, recently started having severe knee pain, only in the left knee. He described the pain as someone cutting off his knee. He would scream at the top of his lungs in pain, tears rolling down his face begging us to do something and make it go away.
The pain seemed to come and go. Every few minutes it would flare up, then subside somewhat. As far as he remembers, he did not fall on his knee or injure it in any way. He did however receive a flu shot about a week before this all started, which makes us a little suspicious.
The pain got so bad that we took him to a knee specialist and he immediately admitted him to the hospital for tests. They did CT, MRI, X-RAY, BONE DENSITY, as well as detailed blood workup, and everything was negative. They even asked us whether or not he was faking. While in the hospital, they gave him massive doses (adult) of Morphine, Demerol, Lortab and they did nothing. Hours later he was still screaming in pain.
We have tried ice, heating pad, hot bath, BenGay, Ibuprofen, etc. with little or no help. He has a prescription for Valium and that is about the only thing that will calm him down enough to rest.
The specialist tested for RF (Rheumatoid Factor) and it came back 128. I understand that this is an elevated value, and does not necessarily mean that is what it is. We have been referred to a RA specialist for further testing, however the earliest we can get in is January. I don't know how much my wife and I can take, let alone our son.
Is there anyone out there that would have some recommendations on how to proceed from here? Are we going in the right direction? Is there something else we can look for? Any help would be greatly appreciated.
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.