Our Journey thru JDM and Life!: Normalcy

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)-

Wednesday, April 25, 2012

Normalcy

:) Oh how I adore and love 'normal days' or a 'normal week'. I admit I love it as much as I like being on the go, traveling and being surrounded by family and friends that are visiting.
I find the beauty is all in the balance :)

This week and next are suppose to play out as normal as our life can be. School for five to six days a week, no plans and just being home and working around the house.
All is going by plan with just a tint hiccup of Alexander staying home from school today due to a sore throat and feeling yucky. No fever but he did ask to stay home and since he never asks this we new he needed to lay low.

Ron took Connor to school and he was still excited to go even without his brother. Connor has been doing amazing on his taper and removal of the Cyclosporin! No signs at all that this would be a fall back at all. Today is his Methrotrexate day and we will keep this for quiet a while but as mentioned in the last blog we are hoping of more tapering on the Prednisone :)

Ron and I celebrated our 13th Wedding Anniversary yesterday as well and what a journey this has been :)

So wishing you all a good week and if you do not hear from me it just might be due to nothing new to report :)