Diagnosis: Suspected Lupus 2004; Raynauds 2006; Sjogren's 2006; CFS 1991; Mono 1985
Meds: Plaquenil 400mg; Tramadol 100mg 3-4x daily; Amitriptyline 10mg; Neurontin 200mg; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain
Hi Hippiemom, I'm sure Erin will be along relatively soon--she is certainly the expert on JRA having had it herself (I think). I'm sorry to hear that your son has it, but I'm also wondering why the doctor did not tell you about the dx? Isn't that somewhat unethical? You know, if you just saw the dx on the lab slip, it may just be there for insurance reasons. Doctors have to have a specific dx to order specific tests, etc... I know it says RA on all of my lab slips, but my rheumatologist is the first to admit that I don't have RA--most likely IBD and/or SLE. You might want to call the pediatric rheumatologist and clarify with him that JRA is your son's dx, and the dx was not simply written on the lab slip for insurance reasons. I would do this before you tell your son anything.
On a positive note, if JRA is in fact what your son has (and I wouldn't doubt it, just think the doctor should have told you), with proper tx, I've read that it can go into remission and he may never have another problem with it. If it goes untreated, however, I suppose it can lead to future problems, as Erin may attest to. In any case, I hope your son feels better soon.
It sounds like your son's rheumatologist is not so forthcoming with information. My lab slips say RA, as I posted earlier, but I may not actually have RA. But, my rheumy has told me that you do have to have a specific dx for the medicines I've been playing around with. My insurance would never pay for a tnf-inhibitor for arthralgia, or even UCTD. I have to have a dx that has been approved for those drugs (IBD, RA, etc...).
I would still call your son's rheumatologist, or if his pediatrician has the report call him and ask about it. JRA is a serious dx, and someone needs to talk to you about it, and certainly to your son. I think my rheumy doesn't like to alarm his patients (me), so he will not volunteer information. I have to specifically ask about it.
Hippiemom, I feel terrible that your son has something autoimmune going on and I pray that they identify it so he can get the proper tx. I can't imagine what it's like to learn that your child(ren) have the same issues that we're dealing with. That's gotta be incredibly difficult. I can't stand it when one of my little girls gets a fever--me and my husband worry endlessly and I check on them every five minutes. If one of them got really sick I would be beside myself with worry.
NSAIDS, if they work for your son, can be wonderful drugs. I know they worked well for me; I stopped taking them for GI issues. Which is a real danger with the NSAIDS. Even people who don't have particular GI issues (e.g., GERD, IBD), they can develop them with the NSAIDS. My rheumy is convinced that they are not the safest drugs in the world. I think they have approved enbrel for pediatric patients. It is an injection, but you get over it quickly. Honestly, though, I wouldn't want to have give my child an injection even once a week. They'd probably freak. In any case, I know there's something out there that will help your son tremendously. It's simply a matter of finding it. Hang in there.