Posted 3/11/2016 11:48 PM (GMT -7)
I can't tell you from the parent's point of view, but I was diagnosed with JRA in early elementary school. At the time my diagnosis was JRA/Lupus/Still's, until JRA was most accurate diagnosis. To this day I don't have a firm diagnosis, but the treatment and symptoms are pretty much the same. Obviously I was pretty young, and this was a long time ago(I'm 39 now), but between my mom and my memories, I might be able to give you some insight.
I'm writing this from the view that it is an autoimmune disorder. I have no experience with a somatoform disorder, but I think others on this board might have some input.
According to my mom, I began to run high fevers and develop rashes. My joints would inflame and become very painful. One of my earliest memories involves recess. The teacher would blow the whistle to line up, and I would always be the last one there. My friends would jump off the monkey bars and other playground equipment and not have a problem, but I was always the slowest, and I also assumed that everyone hurt when jumping off equipment. You mentioned your daughter stating that she wouldn't be able to run properly. Knowing what I know now, I would consider that a red flag. She's a kid-they are programmed to be hyper and zoom around.
I'm a Navy brat, so we moved up and down the east coast. This was before electronic medical records, so it was often like starting over from base to base. In a way this may have been good since there was always a fresh set of eyes involved. I was diagnosed with various problems depending on the Dr-mono, anemia, having a "weak" immune system, being over dramatic, stress, you name it. When my dad was stationed in Arlington, finally there was a Dr on base who listened to all the symptoms, did a detailed exam, and referred me to Walter Reed. A Dr there felt that an autoimmune condition seemed like a possible diagnosis, and I ended up at Children's in DC. Not a lot of pediatric rheumies in the Navy :)
You mention an adult rheumy, has she seen a peds rheumy? An adult with lupus/ra is totally different than a child with lupus/jra. The diseases present differently, and will often follow a different disease progression. It can be like apples and oranges. Even as an adult, if I'm inpatient for disease complications, the consulted rheumy is both a peds and adult Dr. Unfortunately there are not many pediatric rheumies, and those that are often practice together at the same research hospital. I go to a large hospital, and I believe 3 are on staff. Some states may only have 1 or 2 practicing ped docs, total.
ANA showing up can mean nothing, or aid in a diagnosis-like that isn't confusing. Many people can test positive, even at the highest titers, and have it mean nothing. Others can have a diagnosed autoimmune disorder and test negative. It's kinda looked at as one piece in a puzzle. The positive test, with her symptoms, could be a factor in a diagnosis. The CRP shows the amount of inflammation in the system. It can be elevated due to an infection, an autoimmune disorder, or absolutely nothing. Again-a big fat AARRGHHH! It's another piece that can be added to the puzzle. Symptoms+ANA+CRP=? Not that I'm defending the Drs at all, but autoimmune disorders are often the hardest to diagnose. There are other markers that may not show up in blood work for years. My form of JRA never tests positive for some markers. Any Dr relying on blood work ONLY for diagnosis would be one I would walk out on. Especially when it comes to diagnosing a child.
As a parent, I would hate for a diagnosis be missed, just because a Dr doesn't want to dig deeper. As a kid, I'm glad my parents pushed for a diagnosis, since aggressive treatment was started to help manage the disease. Even with the meds I take, I have extensive organ involvement.
And of course, your poor daughter, and you, are left hanging out in "limbo-land". I think you are completely justified in questioning the Drs and their findings. Seeing a therapist is an excellent idea while you are looking for answers. Regardless if it is a somatoform disorder, or an autoimmune disease, she is probably pretty stressed and scared right now. I highly highly recommend consulting with a pediatric rheumatologist even if it means making quite a drive. Peds diseases are a whole different beast.
I hope you are able to come up with some sort of treatment plan for your daughter. Let us know how it goes and if a concrete diagnosis is ever reached.
Single mom to my little man 11yrs old
39yrs old. JRA since a kid. Chronic Uveitis, pleurisy, pericarditis, intersticial lung disease, sjorgrens syndrome, Cushing's Syndrome, gastroparisis
Bilateral TMJ replacements due to bone fusion, port-a-cath, g/j feeding tube, antiphospholipid antibody syndrome(my blood fights itself) epilepsy, MCTD