Well it has got to be a relief to have a direction. I pray that the direction of the Dr.s lead to her good health.

Dan

I am SOOOOOO glad to know that it's not RA--that's a horrible disease. Glad they were able to diagnose it....and poor Emma--there's nothing like knowing you can't have something to make you really want it!

I hope she gets better. My thoughts and prayers are with her.
On a practical note, I know that avoiding dairy can be tricky. Casein is in most margarines, and even in soy cheese, so check those labels.

Public Service Announcement for anyone who might find themselves taking a tetracycline antibiotic:

It's not really dairy per se that's the Forbidden Food. Calcium is the culprit.

Calcium binds with the tetracycline agent and chelates it right out of the body. That means no antibiotic activity going on, which pretty much defeats the purpose of taking the stuff.

So casein'd margarine is fine, but fortified rice milk is right out. No tahini sandwiches. No kale/corn fritters. No spinach/cannelini soup. No salmon or sardines either, but Emma's not a big fish fan anyway.

[Um, yes, at Mommy's house we do actually enjoy tahini sandwiches and kale/corn fritters and spinach/cannelini soup. Shocking, I know.]

Hey L! By weird coincidence, very close to one year after you posted this, we are facing a possible diagnosis of systemic Juvenile Idiopathic Arthritis for Ben. :-/ It's still possible that a virus is causing his problems, and I'd be interested to hear how they caught her Lyme disease. Did she have any symptoms other than the knee pain, and was it only that single joint?

Celia, it was actually several different joints, but never at the same time. We never got the telltale rash that accompanies lyme disease.

We've still got a lot of virus tests in process right now, but not much in the way of answers yet. Ben's been spiking fevers daily since Valentine's Day, with nothing else to show for it except migrating pains in multiple joints. The fevers were progressively spiking higher, and the pains getting more numerous and more painful. Naproxin 2x/day has helped immensely with the pain and seems to be keeping the fever at bay. I did ask our Pedi about Lyme when we first talked about looking for viruses, but at that point, she said that Lyme is very rare around here because we're not in Lyme hotspot area--and, of course, it's the middle of winter. However, I see that it was also the middle of winter when Emma was diagnosed, so now I'm wondering more about that. Did Em have any fevers or anything else in retrospect might have indicated Lyme? Did they ever figure out how long she'd had it? Did she run a fever at all? Sorry to pepper you with all these questions, but you're the only person I know who's been through something similar...

The supposition is that she got it the summer before when she was at camp, because of the number of ticks at camp, and central Minnesota is a Lyme disease hotspot. So she probably had it for about 7-8 months before it was diagnosed. The problem is that the symptoms didn't show up right away, and not in a normal fashion.

I don't remember her running a fever, but it's possible. Mainly it was a lot of joint pain, sometimes debilitating pain, and sometimes the joints would swell. I remember one morning her knee looked like it swallowed a grapefruit.

Thanks, L! It's still a long shot here, as Lyme is only seen around these parts sporadically, but I talked to the Rheumatologist today, and he agrees that it's easy enough to add on to our other tests. Heaven knows they've taken enough blood out of my poor boy! He totally empathizes with Emma's artistic portrayal of the ordeal. FYI, if she ever needs to have blood drawn again, ask them to put numbing cream on first...emalac? It takes an extra 30 minutes before they can do the draw that way, but Ben says it's worth every second. He didn't even feel when the needle went in and it didn't bother him at all through the six or seven full vials they took.

Well, whatever Ben has, it's not Lyme...the blood test came back negative. We've exhausted most of our possibilities now, except for reactive arthritis from an unknown virus (which should resolve itself very soon, in that case, and some of the bloodwork indicates that might be happening...), or it's JIA. I'm just thankful at this point that whatever it is responds so well to the Naproxen and that Ben is tolerating it so well.

Finally, an answer, sort of...Ben has tested positive for a gene marker called HLA-B27, which predisposes him for a number of conditions in the spondyloarthropathy family (which includes Reactive Arthritis) and rules out systemic JIA! He may have another spondylo condition, which is essentially an arthritis of the spine, either instead of or along with Reactive Arthritis, but it will be weeks before that can all be sorted out. What we're left with is something which at best will clear up on its own fairly soon (though it could happen again at some point), or, at worst, a more chronic condition which is nonetheless emminently treatable and which is less likely to affect his lifestyle. Good news, and we're happy to hear it! BTW, how long did it take Emma to get back to normal functioning after the Lyme?