Our Journey thru JDM and Life!: Rough couple of days ....

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)-

Monday, August 27, 2012

Rough couple of days ....

Connor had a very rough Sunday and is still feeling bad today.

Is biggest complaints are walking, pain in his lower back, issues with

his eyes focusing and also the issue with his old port scar that has been bothering him.

It is a strange thing as we found last week that there is a needle head size poky thing under neath the inscision site. If you pull the skin tight you see a little silver black dot sticking out.

No clue what it is but the good news is that it is being addressed.

I had another e-mail from Dr. Soep and Connor will be scheduled for Thursday for his Solumedrol Infusion but I am told I can more it forward it we feel it necessary. I would like to but also want to see how Connor is holding up as he does not want to miss Cottage School again this week.

Dr. Soep also contacted the Surgeon to get his view on the poky issue and will get back with us.

So just hoping Connor stays steady or gets better in the next few days and not worse.

Wishing all of you a good week and I so enjoy seeing all the Back to School Picture postings from so many of you on FB. Our babies sure are growing up :)