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 24, 2012

Another Doctor to add to our Dream Team?

Yesterday was a a painful morning with the boys and I having to get up at 6 am to make our Appointment with Dr. Maynard at Iron Horse Pediatrics at 8 am. Even thought Alexander and I have been getting up at 7 am for the last few days, anything before 7 is truly a huge challenge for us :)
The treat for the boys was a breakfast at Sonics and I got my treat at Starbucks which helped lift our spirits ;)

The Appointment itself went very well and and Dr. Maynard was so attentive and took lots of notes that the time flew and we only realized when leaving the Office that we had spend close to 1 1/2 hours in his office.
He had some recommendations for Alexander and told us he will be calling Dr. Soep to talk to her about Connor and also see if we can expand the blood work taken from Connor. He was interest in the Blood pallets for Connor and he also had signed the script for the Orthopedic Braces for Connor.

We left the Appointment feel good to have even more eyes looking into the cause of Connor's latest set backs. I am just having the feeling that JM is the core problem but maybe this virus that set off this flare is still causing more havoc then we like ....

Good news was we were back home by about 11 am and were able to still squeeze in school time and a NAP!!!!

Today is a very excited day for us as the USA Pro Challenge Bike Race is coming past our front door. This Stage goes from Breckenridge to CSprings along HWY 24 so we are having a front row seat :)

Oh, I forgot to mention in regards to Connor we were also inspired by the Miller Family to try out for him to use the Sauna to see if it would help relax his muscles and so far he was in it twice this week. He really likes it and so does Alexander who we hope it might help to relax him some :) 

Funny, how things always come full circle. I remember posting over two years ago that the more immobile Connor gets the more Alexander starts moving. 

Wishing you all a nice weekend!



Hugs,

R A C A

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