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

Thursday, February 4, 2010

National Marrow Donor Program - Be The Match Marrow Registry

I just wanted to add this Web Site since Connor's 14 year old Room-mate here at CMH in Chicago has Leukemia as does one of the boys friends cousin who is just 6 years old. Being a Donor could safe a child or adults life. Please consider it! Hugs, R A C A

National Marrow Donor Program - Be The Match Marrow Registry
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2 comments:

  1. txmomof2February 4, 2010 at 7:08 PM

    Great info. for people to be aware of. Thanks for spreading the info. ~my dad died of leukemia in 2002. I love the pictures of your boys together on the blog. Thanks for keeping us updated this way and we continue to pray for Connor and the Smith family.

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  2. ILoveLucyLouFebruary 5, 2010 at 6:40 PM

    Alison... so so so sorry to hear about your Dad. A lot of the kids on this floor have Leukemia and just talked to a Grandma who told me her Grand-daughter wanted to be a doctor but they were just informed today that she won't make it. I can not comprehend the pain they must be going through but knew I just wanted to sit down and cry.......
    Hugs to you! and a prayer that they will find a cure someday so no one has to suffer through this ever again!

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