Timeline from first symptom to diagnosis

Our son Connor was diagnosed with JDM in January of 2010 and here is a bit of a timeline to show you how this diagnosis was reached...

Towards the end of November 2009, Connor mentioned some pain in his right foot. We found a Plantar Wart and began treating it. We went on vacation in Germany were he mentioned a pain in his knee's, to feeling in his own words, pain 'inside his legs'. By the time we got home on December 9, he needed to be carried almost everywhere. By the end of December he was unable to feed himself, dress himself, sit up or down, lay down and of course walk. Here is a list of tests he went through between December 10 to December 28, 2009

X-ray of his Hips
MRI of his spine
X-ray of his chest
CAT Scan of his brain
CAT Scan of his chest
MRI of his chest
MRI of his hips
Numerous Blood Work
Spinal Tap
and we finished with a Muscle Biopsy

There were many speculations of what might be causing Connor so much pain and one of them was Gullian Barre Syndrom (GBS) due to his first symptoms showing up within a few days of his H1N1 Flu Shot.

The final Diagnosis came on January 11, 2010
-Juvenile Dermatomyositis (JDM)-

Hope

Hope

Monday, September 27, 2010

I am so hoping for an early night tonight because today was a busy day with us on being on the move for most of the day.

Connor and Alexander were really hurting because they decided last night to have a little slumber party in their room and had moved all their bedding on the floor while playing under the covers with their nightlights. Ron watched them at 11 PM with a Flashlight and they never noticed he was standing there until he asked them what they were doing. Can you tell the advantage of Home Schooling for me? There would have been pain all around if I had to wake them up early. As it was they came out of their bedroom at 8:30 AM.

I am not sure how I did it but I was up at 6:45 AM heading to the workout room to workout on the Elliptical and work with some weights. Now is there truly a person that says working out is fun??? I have been very dedicated to it so I can dream of wearing a two piece Bikini for our cruise, but fun does not enter my brain at all. The one thing that gets me through the workout is good music and being an 80's girl I occasionally put on some of the music from way back then. I was moving well with Prince and Kiss and right after was suppose to come Tina Turner when to my big surprise a song started up that at first I could not recognize by the starting melody but turned into the 'Itsy Bitsy Spider' kid song. ... NOT a good workout song at all :)

So and then I received two calls today from Dr. Rider's Office and one was for our flight itinerary and the second for our Accommodations. So it really is all set for us to head to Washington D.C. in November for the Twin Research Study.
My job now is to get all the medical Documentation together from every doctor the boys saw from one year prior to symptoms and Diagnosis. We only have about 1 1/2 months between the two which seems rare by JM standards.

My only wish for today would have been that the day had more hours. It went by so fast and I feel like I only got half the things I wanted accomplished.

The biggest highlight for us was being able to spend time again with Naoma and Sandy.....

The sad part of today was Ron leaving again. He was gone for four days, came home for one day, and left again today for another four days. It is a crazy schedule and we are holding onto the dream of him Retiring next year.

Hugs,

R A C A



Posted by at

No comments:

Post a Comment

Subscribe to: Post Comments (Atom)