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

Wednesday, February 26, 2014

Surgery update

Today the boys had both PT again and I was able to talk to Ashley who is the scheduler for the Surgeons at the Office.
It looks like the main Surgeon, Dr. Mindy Siegel, is not sure yet when she will return to the Clinic, and in order for the boys surgery to not be pushed back to much we are now going to switch Surgeons.
Dr. Shaw will take a look at Connor and Alexander next week on March 4, and depending how his surgery schedule is like there is a possibility then that the surgery could be as soon as March 26. If for any reason Dr. Siegel returns prior to the surgery she will then take back over.

Alexander was already in his PT season when I talked to the scheduler but Connor was right next to me. So he told them that he wants it done as soon as possible. He wants to be able to figure out how to walk with crutches before his Birthday comes around - Now if it had been Alexander by my side he would have tried to talk everyone out of scheduling the surgery period.
My precious youngest might have had his health battles in his life BUT they were mostly happening before the age of 3, which means a lot of his memories are purely put together from us telling him. He is very scared about all this and of course does not have his brothers acceptance of things. So in a twisted way it will be good for them to go through this together, since one thing Alexander has and that is a competitive streak that might help him recuperate after surgery if he sees his brother is pushing forward.

Hugs,

R A C A

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