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, August 22, 2013

Alexander's Journey.....

Today was Alexander's turn to see an Orthopedic Surgeon as he has shown some very strange walking and running habits in the past year.

I had brought it to the attention of Dr. Maynard, the boys Pediatrician, who gave us a referral to see Dr. Mindy Siegel. 

Today was the day and Alexander got to meet PA Bershinsky who ordered some x-rays right away.

The results are as followed. Both feet have issues but not the same kinds.
His right foot collapses in the middle, possible due to weak muscles. The assessment is that Inserts and Physical Therapy should be able to correct this by strengthening his muscles in his foot.
His left foot sadly is another matter as his ankle is not aligned with his knee. Most likely the insert and PT will not have much of an impact if at all. In that case he will look at it again in 4 months and then most likely will schedule surgery to correct the bones by breaking and resetting them. That will mean 8 weeks in a cast and crutches. 

Alexander was NOT thrilled to hear this but the brave little boy he is he accepted it and asked many questions already about the procedure and the rehab. 
This of course might hit right during the Winter Snowboard and Ski Season but then we also had Connor in casts for 8 weeks during that time two or was it three years ago? Gosh my brain is tired......

We have been very very busy either traveling or having visitors all summer which has been WONDERFUL and I will post about our adventures later on, but right now I admit I am sleep deprived, have not been eating well and my workout session pretty much disappeared. So now I am tired and we are facing a 5K this Sunday - lol

Hoping this will put me back into gear and move towards a healthier life style again.
Also the boys are now back in full time school and not to happy about it... they do come after their Mom in that regard ;)





Hugs,

R A C A

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