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, March 22, 2010

Mirror Image? Day 4 at Home ...





Today I am posting some pictures for you so you can get a closer comparison as to how much Connor has changed in looks. For those of you that told me in the past you could not keep them apart I can tell you it would not take any effort now.
I would not have thought of this if it had not been for Connor himself asking me to. He looked in the mirror last night and for the first time since the steroids made some impact he really noticed, possibly because he sees Alexander next to him. He asked me 'Mami, why is my face not oval anymore', he said it looks round now. So today he asked me to take pictures of their bellies ...

Connor is doing wonderful at home and has been back to his favorite past time of coloring. We are making use of all the Star Wars Coloring Books Connor and Alexander received in the last month :)

We also had our delivery of Connor's Solumedrol and Methrotrexate this afternoon. He should have his first infusion here at home tomorrow morning at 9 AM. I have to say I was not prepared for the amount of drugs that would be delivered and I am grateful to Ron's Refrigerator he has in his workout room. Since it all needs to be refrigerated and it is a big amount it filled it all up!

It was another beautiful sunny day here in Lake George and we all got to enjoy some time outside on our back deck as well. Can I say again how precious it is to be back in a routine?

Hugs,
R A C A

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