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

Saturday, March 2, 2013

Carmen & Klaudia

I have a couple of updates on my sisters and some are good and some are not the best.

Carmen was released two days ago and is as of now at home to wait for her departure to a Rehab-clinic on March 5 :) She is doing well so we are very happy on that front :)

Klaudia on the other hand has us still very worried. As of now she underwent three surgeries. The first one was very intense as they removed parts of the colon that had ruptured and also reattached and fixed her stomach.
The two following surgeries were due to them opening her up again to clean the bacterias in her body due to the ruptured colon and stomach. She is still very unstable so has been in an induced Coma since she was admitted. Sadly her Kidneys are also not doing well and dialysis is a consideration right now.
It really is a day by day waiting game and I am grateful for Skype, phones and e-mail as we are in constant contact with Family.

Thank You all that have checked in and if I hear or find out more I will post.

Hugs,

Anke

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