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

Tuesday, May 6, 2014

Walking Casts....



Needing to catch up with all the happened in a May....

On April 23 the boys got their so wanted walking casts! Now the process of getting the old casts off and the new casts on was quiet an experience as my two warriors (including me) found out only on that day that both had two pins in their ankles that needed to be removed. It was also a tad terrifying to see the actual surgery incisions but thanks to Sam who had the job to change the casts and pull the pins out it went fairly smoothly. 
Dr. Shaw told the boys he did not tell them about the pins so they would not worry about it and I admit I was glad I did not know either! 
Now for the two weeks after they were allowed to put weight in their feet but still assisted by crutches. After that, Connor and Aleander were told, they can walk without crutches. Ironically both are afraid to put weight on their feet even at the two week mark.

Right now we are facing a new battle, smaller but still keeps me in edge, as of this Saturday Alexander ran a fever of 103 and complaining of a sore throat and stuffy nose. I tried to isolate him and we got the fever down by Sunday afternoon but as of this am Connor is feeling yucky and telling me he has a sore throat. Do off to calling the doctor this am and hoping it is just a cold!









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