Test results and such

There hasn't been much time to post lately!  I have been studying away.  My last day of summer session courses is Wednesday.  I still have a lot of work to do, but I finally feel a bit less pressure.  And I've had some time to mull things over.

The test results from the EKG, and the echo were both pretty good, but the chest CT showed "an air-filled esophagus".  It took me a while to get a good answer on that but it boils down to they likelihood of dysphasia in the muscles of her throat.  The nurse practitioner replied, "

An air filled esophagus can be seen with dysmotility of the esophagus, or if the muscles are affected in the esophagus. We can see this with MCTD.  We would only worry if this affected her ability to swallow or if anything she was swallowing was aspirated. This would show up on the barium swallow.  Let us know if she has trouble swallowing or chokes easily of foods or liquids. I will try to set up her barium swallow and PFTs for the 1^st." 

I found a nifty research paper on pediatric MCTD that also mentions just this problem.    The entire article is a whole paragraph, but it does say that out of the 12 patients that they followed for fifteen years, they that:  "Inflammatory manifestations (arthritis, fever, and skin rash) improved following treatment, whereas sclerodermatous features (sclerodactyly, esophageal disease, and vasculopathy) persisted and were often unresponsive to therapy. The organ involvement-free rates at 2 years, 5 years, and 10 years were 91.7%, 78.6%, and 52.4%, respectively." 

When Emily was first diagnosed with Dermatomyositis, they did an upper GI and found that the muscles on one side were not functioning properly.  That made sense at the time; she was having trouble swallowing, she was losing her voice, and her bird-like appetite became worse.  This time... I wasn't expecting this.  It was really rather out of the blue.  And I can't help but wonder, if there is dysphasia, how long has it been present?  Is it a result of the Dermatomyositis, or is it a scleroderma feature?  I had noted that her AST, one of the liver enzymes, was just a touch elevated.  It hadn't been elevated in at least a year.  My new mantra has become, "there is no point in worrying when you don't know for sure what you are worrying about."  In every other way she is currently doing fabulously!  

I'm not sure if it's the Orencia kicking in or perhaps it is the magnetic jewelry as she credits, but her joints have done a 180 in the past week or two.  Previously her ankles, knees and hips were really bothering her.  Right now it seems to be more fatigue than anything, and that isn't even that bad.  I made her new anklets and necklace the week after coming home.  For those that don't know, we were told that magnets help somehow.  To buy a magnet bracelet is only about $10, so we thought that we would give it a shot.  She swears that it works, that it really helps with the pain.  I can't say that it really does, or if it's maybe psychosomatic, but either way it seems to help her so why not?  I can buy a bunch of beads, 5 meters of string, and a string of magnets pretty cheap, and it's so easy to make something that she will like and wear.  Since she didn't want to start the Orencia in the first place, I think that even if she thought it was working, she would still say it's the magnets!   We were told that if the Orencia starts to work then we can drop the Remicade.  Remicade is a 4 hour infusion, plus an hour for Solumedrol (IV steroids) first, IViG can be 4-24 for her, and Orencia is a half hour.  So, if we move to Orencia only, unless it is a Rituxan month, we may be able to make an 11 AM appointment and NOT have to stay the night at the hospital!  On a Rituxan month we would have to stay late; that's another 4 hour med, but perhaps we wouldn't have to stay the night.  

In other news, Zachary is doing pretty well.  Despite Prilosec, he's had a few really bad stomach nights, but I may be able to pass it off as a bug.  I'm still keeping a weary eye on the situation, given his penchant for spending very long periods of time in the restroom, but it doesn't seem to be an emergency.  His psoriasis is almost non-existent.  He has had some random pains, but nothing lasting.  I am going to ask next time he is seen what is up with his blotches.  Where there were once psoriasis scales, there are now white patches.  It may possibly be Vitiligo, which wouldn't surprise me.  I really was sure of that for a while, but they do seem to be darkening a little.  I'm hoping that by the time he is seen next they will be gone.  We shall see!  

My next post in the next few days will be from one of my paper's from school.  For our persuasive paper, I chose to write about what I know best- the myths and misconceptions of Juvenile Arthritis.  If we all help to raise awareness,  perhaps one day we won't need to.