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 18, 2010

Day 22 overal but Day 2 at TCH - Part 1

Good Morning everyone....

I truly thought coming back to Colorado would lift our spirits and we would all feel up beat but I have to say Connor and I are trying our best but we both seem a bit depressed since yesterday. The transport here even thought it went very smooth was also very exhausting and tiring.
Then we got here to The Children's Hospital - which by all accounts is just beautiful to look at and the rooms could give some Hotel Suits a run for their money - we still felt out of place a bit. We so have come to love all the employees at CMH that we felt a strange sense of home there. Here we arrived and felt like strangers.... Meeting new nurses was kind of difficult because even thought they were nice we still had to go through the effort to explain everything from the beginning which at this point is very trying.
Connor was in the worse mood ever when we arrived because he was hungry, tired and had not gotten his Tylenol since 7 AM in the morning. So when everyone came to make an assessment he pretty much threw a fit. I kept telling them he needs food asap and he really needs some Tylenol for his pain and discomfort. Let's just say even with the best efforts it took and hour to get there and then another to get Connor stable and in a decent mood again.
On the bright side, when Dr. Soep came by after 5 PM he was once again in a happy mood and was very charming.. so I am hopeful we left a somewhat decent impression - ha ha.

We both woke up at 5:45 AM and the night has gone pretty uneventful. Connor got up twice to go to the Bathroom and now he is laying in bed watching Star Wars Klone Wars on the Flat Screen TV. I got to sleep on a very comfortable pull out sofa and I am truly not kidding about the comforts of these rooms. Even the private bathroom is heavenly :)

So, more later about today's Day but just wanted to give you a feel about yesterdays events :)

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