Monday, November 10, 2008

The Moment of Truth

Coming up on Wednesday, Emma will visit the doctors at Shriner's in order to figure out a treatment plan for her arthritis. We keep hearing how incredible they are, and we are certainly hoping that is the case. If that were the only reason for her and Amy's jaunt to Dallas, then that would be all well and good. Unfortunately it's not.

Well over a year ago, Emma was diagnosed with Juvenile Rheumatoid Arthritis and put on a treatment plan that included methotrexate (an anti-cancer drug) and Celebrex. Almost immediately, Emma stopped limping down the hall in the morning and it appeared that the treatment was working. And then Amy decided we might ought to test her urine. You would think one of her 5 specialists would have thought of that, but as always, Amy was Emma's advocate. And the results of her tests were not good. She had large amounts of blood and protein in her urine. And so it's gone on for a year.

We tried stopping the Celebrex and the methotrexate, and the only benefit is that Emma seems to be much happier and even feel better. But she's not better. And that's not good. So on Thursday morning a doctor will take a biopsy of her kidney, and hopefully it will give us an answer. The problem is that there really is no good choice. As I understand it, here are our options: the blood and protein are caused by the Celebrex or methotrexate, or it's caused by Lupus.

Lupus. It's hard to even say, isn't it? It's pretty sad when our best option is that a drug used to treat her arthritis is causing her kidneys to fail. Or maybe it's not arthritis at all. Lupus is often missed but presents with swelling that mimics arthritis and...you guessed it...kidney problems.

I'll let you all know something as soon as I do.

9 comments:

  1. Emma, and your family, are in my thoughts and prayers. I will be thinking of you on Thursday.

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  2. Yes, with a heavy heart we are praying here. Keep us posted.

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  3. Sending all my good ju-ju your way.

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  4. Lots of prayers coming from New York. There have to be some doctors out there with an answer for your family and Emma. Thank goodness your wife was on top of it and thought to have her urine tested. What a disaster if she had not been so proactive. Methotrexate could very well be the culprit, hope that is what it was and now that she is off the drug she will eventually recover. I would definitely get a second opinion whatever they discover so you can be absolutely sure and she can get the right meds. Very frustrating if she was incorrectly treated for JRA and did not have it. Heck, at this point, whatever their new diagnosis, I would not be able to accept it at face value and I would get a THIRD, FOURTH or even FIFTH opinion. I know you will find help for your little girl.

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  5. You guys will be in my prayers. Keep us updated.

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  6. I was out of town with very limited internet access, so I missed all of this stuff about Emma. But I want to tell you guys that Sam and I are thinking about all of you. Let us know what the docs said about the results and what the next step is. If there is anything at all that I can do, please let me know. I'm not sure if you guys still come out here to visit the BDC, but if so holler the next time a trip is planned and we'll get together.

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  7. Hey Nick,

    You and your family are in my prayers. Even this late after the post. I hope you have some good news.

    (Hugs)

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  8. I've been thinking about Emma and you all so I'm sending good thoughts and well wishes. I hope everything turned out okay.

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