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

Friday, August 31, 2012

Lab Results Up-Date ....

So I had a most positive email waiting for me this morning from our beloved Dr. Soep.
Connor's Blood Work is looking better each time and the numbers are coming down nicely.
The part that throws us now is wondering what is going on with Connor and his continue measure of pain he is displaying.

Our next step will be to look into a Pain Clinic to help Connor deal and manage his pain, but also look into therapy for him to see how much his fear of JM is impacting his movements as well. 
There has been a lot of fear in Connor about this flare. He is worried he will have to be hospitalized again, he is worried that he will have to have his Port put back in. He worries about missing out on school activities and Snow Boarding this Winter, etc etc
We all agree that his fears might be contributing to his confidence of moving.

Does this make sense to all of you?

It would be actually nice if this was the core of it all and not something new that is causing him all this pain. This morning he was hardly moving and when I told him we had to work on his school pages he just sat in his chair with tears running down his face.
It was so sad but I kept moving on and after about 20 minutes he turned his mood around and has been a trouper at school. 

I also left a message with the Surgeons Office to take care of the Port Issue and the poky thing that bothers Connor a lot. I hope we get a response soon on this as well :)

Alexander on the other hand is battling a cold right now with a very stuffy nose and an inability to sleep through the nights. The last three nights we woke up in the am and found him sleeping on the Sofa in the living room. So we are curious to see how good we are at keeping this cold contained to sweet Alexander!

On a different note we had a wildlife experience today when Apple and Tasha cornered an animal on a tree on our 'Mountain'.
I admit I was scared to see a Bear in the Tree only to discover there was Cat up in the tree.
We locked up the girls and went inside to give him or her some time to get down, sadly for us but happily for the Cat when we went back to check on him, or her, 30 min later there was no more sight of it.
We so hope it found it's way home! and I am hoping this was an accident and no one in their mind will let a Pet like a Cat run around the Forests here. This was 'just' our dogs cornering it but a big bird, Coyote, Fox, Bobcat or Mountain Lion would probably think he made a great snack.









Hugs,

R A C A


No comments:

Post a Comment