Crowd Sourcing an Answer for #4

Last updated on: August 22, 2014 at 4:02 pm by Rebecca Frech

Crowd Sourcing an Answer for #4 2014-08-22T16:02:33-05:00 Rebecca Frech

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Scottish Rite has declined to see our girl (age 9) because what’s going on with her “doesn’t sound as if it’s related to her arthritis.” I have all kinds of thoughts about this, but I’m trying to clean up my language. Our family doctor ran blood tests which have all come back normal. We’re trying to figure out what to try next. (Our family doc is game for whatever we want to try.)

This seems to be progressing very quickly, so I’m crowd sourcing a brainstorming session here. There are no dumb ideas or questions (unless they really are dumb) so throw those ideas out here.

Here’s the rundown of what’s been going on:

Last Monday she was feeling fine. Except for the arthritis flare in her left knee, she was basically healthy.

Tuesday She complained that her legs felt kind of tired, but she was still moving fine.

Wednesday She said that her legs felt tired and heavy. She was still moving, but had a more pronounced limp than usual.

Thursday She was still walking with a limp and had begun walking across the room from object to object instead of in a straight line. She complained that she felt cold but wasn’t running a fever.

Friday Her temp was slightly elevated at 99.6. She was still limping and said her legs felt even weaker. That night, as she walked across the room, her legs buckled and she fell.

Saturday She spent most of the day on the couch because she was tired. Her temp was still in the 99 range. She was using her cane of and on for support.

Sunday She stayed home from Mass because her legs felt too weak to walk. When she did walk, she had to hold on to walls or furniture to keep from falling.

Monday We went to see our GP. She was unable to take more than one step towards him without my support under her arms. He tested the strength in her legs and said it was noticeably less than it should be. There was no new swelling in either leg or her back. He ran blood tests to check for elevated white blood cells (evidence of infection) and signs of muscle break down in her blood. All tests came back normal. He gave her crutches to help until we have answers.

Tuesday She is unable to stand without crutches or other support.

It’s moving so quickly that I’m afraid she’ll be in a wheelchair before much longer. I want to avoid this. Have any of you seen, heard of, or experienced anything like this? I’m looking for theories, guesses, and/or anecdotes here.

If she were your daughter where would you begin looking? Neurology? Muscles? Infectious disease? Alien attack? Throw it out there. Time is ticking and we don’t know if that makes a difference in the end…but it could.

Please feel free to share and link to this post, the more the merrier. We need lots of eyes and lots of ideas.

Edited to add: It is 8:30 am and we are leaving for children’s hospital of Dallas. Thanks for your input. I’ll let you know what we learn.

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