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, June 22, 2010

Blood Work Up-Date

I received a call from Dr. Soep this afternoon and the blood levels all look good! :)

There are a couple of levels that have changed a bit but nothing that looks alarming. We are still waiting on two results that had to be send in and if those would come back with high readings then we are considering going back to weekly Solumedrol Infusions BUT as of now we are going to stay on the every other week schedule.

We are hoping that we will hear something from Memorial about Connor's Therapy as well and Dr. Soep is talking to Michelle again tomorrow and if needed will call Memorial herself this week.

Connor will also get another therapy assessment next week when we go to TCH for his scheduled IVIG. Dr. Soep e-mailed all of Connor's Therapists from when he stayed there at TCH and hopefully they can take a look at him and give us there thoughts on what is going on.

I am truly happy to see things moving!

Hugs,

R A C A
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