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, April 19, 2013

Trying to catch up ... Some great JM News!!!!

I know there is a lot I need to catch up on but since we got some wonderful news yesterday that are JM related I wanted to jump back in and update you all :)

Yesterday was our 'usual' Thursday when we head down the 'Mountain' to catch up on Medical Appointments. We had already stopped at Iron Horse Pediatrics to pick up some Prescriptions and went over to Memorial Healths Therapy for Connors Physical Therapy App.
I was sitting in the waiting room with Alexander and thinking how it has been almost a year again for us coming here and if there would be some light at the end of the tunnel......
When his therapist came in after Connor's session she asked to talk to me in the hallway. She told me that she things she has gotten as far as she can with Connor and that she measured his strength in his legs and the numbers were normal for a 9 year old boy :) The rest of his tightness can be worked on with his braces at home!
So FREEDOM for us from one more medical Appointment. We are all thrilled and so happy about this!

Reflecting back it has been  close to a one year journey since Connor's Flare that started up after he went to the JA Camp that caused his emotional breakdown. I truly still believe that stress caused that flare last year. So it took him 9 months to get back to where he was!!!
I am now hoping we can get through the summer with no flare and no more repeat of what happened last year.
Ironically, the invite for the JA Camp came in the mail last week ... Connor is once again asking and begging us to go.
Ron and I are both on the same page on this one and think he needs to wait for one more year before he tries it again. It is not worth the risk and while he is a year older we are still not sure if he is mature enough yet to give it a try again.

Next week will be VERY busy with the boys yearly State Tests being done at Gateway Elementary. First up is the MAPS Testing and two days later is the writing test that is 3 hours long.

Wish them luck and also as soon as I get some time I will update you all on our fun Germany Trip :)

Hugs,
R A C A

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