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, March 16, 2010

Day 48 / 28 at TCH ... Sonogram & Blood Tests




A truly good morning for Connor all around :) He was a delight to be with from the time he woke up, through all is therapies and even during the 5 hour wait without food and drink for his Sonogram on his Tummy. He only had mood swings today when we had visitors.
First we had another precious visit from Pastor Carlson and his lovely wife and then we had a visit from Mr. Kent, Emma's Dad.
Connor got a little upset at the first visit because he felt he was ignored by me :) and then when it was Mr. Kent visiting he thought he would be the one ignoring us. Funny how he can switch from one behavior to the other without missing a beat. I get the feeling when we do get released we all as a family will need to adjust again to how it is we need to behave around each other AND to see if we can get some manners back into place - ha ha

Connor did have some blood work done today and the Sonogram I mentioned. Dr. Soep told us last weekend that the decision of his release will be made on how well his blood levels turn out this week and the results for today are as following.
CK 55 (down from 80 last week - which is great news)
Von Willebrand 455 (up from 300 last week). This change alone might not put a damper on a possible release but his Sonogram might.....
The pictures taken today show his liver slightly enlarged and dense looking. The blood levels really don't give an conclusive picture but there is a possibility now that his liver is inflamed and this would or could point towards Hepatitis....
We will now talk to someone tomorrow plus he will give some more blood in the morning as well..

So who said it can get bored here in the Hospital? Always something new for sure ...

Right now Connor is very excited to go to the St. Patrick's Day Party here at TCH at 6 PM. We are both sporting something green so no worries for us to get pinched ...

Okay, we are back from the Party and ready for bed. The Party was not what Connor was hoping for as he wanted some music and green food BUT he did get to do some arts and crafts.
Once we got back to the room he complained about a headache and got some more Tylenol. He now had his 7 PM and 8 PM medications and we are hoping that some good sleep will help the two of us.

Tomorrow will be another exciting day for Connor as he has been awarded another Field Trip with his PT and OT Therapist. We are now heading to the Denver Zoo for 3 hours in the morning :) Just like last time I am not sure who is more excited of getting out? Connor or is Mom? :)

Hugs,
R A C A


P.S. Ron took the pictures above tow days ago and 'YES' what you see him eating in one of them is Cheese on Rice Crispies :-O

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