Our Journey thru JDM and Life!: Therapy is a go .....

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)-

Wednesday, June 23, 2010

Therapy is a go .....

A big THANK YOU today to Dr. Jennifer Soep for getting us into a Therapy Evaluation tomorrow! I had a wonderful talk with Dr. Soep this morning and she talked to the person in charge at the Memorial Pediatric Center and she told them Connor needed to be assessed as soon as possible and just one hour after her call I got a call from Memorial and they gave us an Appointment for tomorrow at 11:30 AM :) I am happy but it also shows they react better to a Doctor's call then to a call from a Mom ....

I am also glad to announce for those of you that do not follow the World Cup that the USA beat Algeria 1:0 and is the leader of their group ... the last time this happened was in 1930! Way to go USA!

And then of course I am so so so happy to say that Germany beat Ghana 1:0 and is also the leader of their group, which Germany has been uninterrupted since 1984 :) Now Germany is facing England, while the USA gets to play against Ghana. So you see it is not to late to join the fun! The games are shown on ESPN ... so get a move on and support you home team!!! They deserve it because they are representing your country in a wonderful way that should make you proud.

I also want to mention that Connor and Alexander told me today at lunch that their favorite part at the Renaissance Festival were the Belly Dancers. When I asked them why this is they both replied:

'Because they were beautiful and showed a lot of skin which we love' ... spoken from the heart by two 6 year old boys :) and you tell me this is not genetic? - HaHa

So now I am off to take a break and check on my husbands flight home. It is WAY oversold and I hope he gets a seat. I additionally deserve a break because I cleaned and cleaned today and my hallways and bathrooms are sparkling - lets see for how long :)

Hugs,

R A C A