Sunday, February 26, 2012

Finally, some answers...

     Well, I finally got the call from Elliana's doctor that I have been waiting for.  About ten days ago, Elliana had a second bone biopsy.  This one was done by an orthopedic surgeon and they took two or three tiny pieces of bone from her ankle.  Elli's pain has subsided a lot since then because she has been using crutches and a wheelchair.  The fact that she has not been putting much weight on her legs has helped her to have a lot less pain.  The doctor finally called with the results on Friday night.  He said that the biopsy came back with results that support the idea of CRMO (chronic recurrent multi-focal osteomylitis).  We have been waiting for this diagnosis because now that we have it they can start steroids or other treatments to help with pain and control the inflammation that is in her bones.  The condition mainly occurs in children and some teenagers.  Often people outgrow it!  It is an inflammatory condition that will get worse at times and then subside.  It can be very painful and Elli has had a few possible sights, namely her pelvis, a knee, and an ankle.  We have realized that some of the pain and difficulties Elliana has had when walking the last couple of years may actually have been caused by this condition.  It is a difficult condition to diagnose and occurs more often in girls, but with a 1 in a million rate.  We are waiting on results for genetic testing for dystonia.  There is a chance that she might not have dystonia after all.  Many of the symptoms that we have credited to dystonia might actually be caused by this inflammatory condition instead.  Honestly, I think she might have both, but even if she does, I think that her dystonia is not nearly as severe as I had thought before.  I think that the CRMO made everything much worse.  Hopefully we will get the results of the genetic testing within the next few weeks.  Thank goodness for modern medicine and wonderful doctors!
     Onto other events, I took a well-deserved night off while my in-laws watched the kids.  Caring for Elli lately has been pretty intense and it is hard having David gone still.  My in-laws help quite a bit, but I really needed some "me time".  I grabbed dinner at Texas Roadhouse, went shopping at the mall, and watched a movie at the theater.  I saw "Big Miracle" and it was quite good.  I would recommend it for older kids and adults, but not younger kids because it deals with Inuit hunting and more mature topics like that.  It tells the story of a whale family that was trapped by ice near Alaska during the 1980's.  I actually remember this happening and enjoyed learning more about the circumstances surrounding the rescue efforts.  It was so nice to have a break from parenting and just enjoy myself.  I am glad that my in-laws helped with the kids and let them have a fun pizza and movie night!

1 comment:

  1. I'm glad you found out what the trouble was. Hopefully things will work out better for you.