Mixed feelings - info needed

May 11, 2011

Good morning all,

Today I have mixed feelings. After two years of uncertainty, we have definition.

My daughter had been sero-negative, mild to moderate pain in multiple joints

that we thought had been controlled by medicine. To the point where the doctors

were not completely convinced it was arthritis. After her doctor passing away,

we had the first appointment yesterday with the new rheum. I appreciated his

thoroughness and direct yet fair approach. He flat out said that by looking at

the previous notes, he was prepared to find a child without arthritis. Expected

possibly more joint pain from her celiac. He listened and agreed that generally

that only comes when a celiac is ingesting gluten. The pain tends to go away if

completely gluten free. He was fair in listening that this child does not cheat,

she gets far too sick, too quickly and for a long time. Then, he started his

exam. He found a contracture in one knee with leg lengthening swelling and mild

warmth. The other knee seemed swollen as well with some " thickening " he said. In

his opinion, this only happens from arthritis and has been going on for some

time. He leans towards spondylo and/or psoriatic typing.

So, now despite vagueness in proof/symptoms, we have formal arthritis. While I

am glad to finally have some confirmation of what we are dealing with, the

magnitude I find overwhelming me today. Contractures. Damn. She is just turning

into a teenager. She should not have to deal with this.I know this is nothing

new here. I just had to get it out so I can be stronger for her.

[deep breath out] Ok. Yesterday was a lot to take in. In regards to the

contracture and over-growing limb..... I remember him saying something about an

ortho consult and ways to deal with it. Being a bit time critical as she her

body is entering the last stage of growth before adulthood. Something about

staple-like things and the potential (in extreme cases) of them having to cause

trauma to the (?) growth plates? As I sit here, I am realizing how little of

that I absorbed. Can someone with some experience in this help explain it to me?

Thanks,

Cheryl

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