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

Sunday, January 31, 2010

Day 4 at CMH

As I told you all last night Connor decided to go to sleep at 6:30 PM and then woke up for us usual vital check at 8 PM. This left him talking about non stop for 10 minutes and then he crashed again :) He did cough a bit in the beginning but we found out that by keeping his bed at a 10' or 15' degree angle he will stop coughing.

There were no tests at all today and the highlight was seeing the Rainbow therapy dog, Sam, that came to visit the children today. Alexander was able to work with Sam quiet a bit and loved it. Connor did well until the end when he had to go to the bathroom and fell down. He cried and we ended taking him back to the room for more pain meds. We went back to the playroom this afternoon and Alexander played video games again while Connor tried to colored about 10 pictures in a 2 hour time period.

Ron went to Target for some shopping and I will head over to the House soon with Alexander for some Laundry time. We are hoping to find out tomorrow when we can head back home and continue treatments there. One of the reasons for being here is to get the perfect treatment plan that we can implement at a hospital at home. Tomorrow Connor will have some blood work done in the morning as well as Alexander.

More will come later today or tomorrow when we get more news :)

Not much more to report tonight other then Connor asking to go to sleep again at 7 PM. Ron, Alexander and I had some quiet time having dinner (Pizza) at the Parents Lounge and now we are all off to bed.

... there is one up-date... just talked to Ron and even thought Connor asks to go to bed early he does wake up for his 8 PM vital checks and added medicine intake and he does not do well when that happens. Tonight he got very up-set and cried a lot. We are now evaluating that his walking yesterday and then taking him to the play area might have been to much. He probably does not feel as much pain anymore so wants to do things but in the big picture he is still very weak and has hardly any muscle strengh. So will ask the Medical Team tomorrow for some advice....

Hugs,
R A C A

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