Our Journey thru JDM and Life!: A new Chapter for us!!!

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)-

Friday, October 3, 2014

A new Chapter for us!!!

To say I am happy or thrilled would be an understatement! We just got Connor's latest blood work in after his discontinued use of Methrotrexate. The email I received from Michelle was truly the beginning of a new chapter.

Thank you to the amazing and talented Medical Rock Star Team that looked out for Connor in the last 5 years (or close to it).

Thank You to all the tireless work of each therapist, PT, OT, Speech etc etc.

Thank you to all the friends who kept sending love and support even when I was at my most angry and heartbroken state.

I admit everything I look at at our past starts with:

'Before JDM we ……'

'After JDM we…..'

There is no denying all 4 of us are different due to this disease but while I often looked at the things we lost I am also looking back at every step that made us more aware and educated.

The fear will never leave me completely since he is not in remission yet and since there is no Cure yet.

So here are parts of the e-mail I received this am:

Hi Anke,

I just wanted to let you know that Connor’s labs look great!!!! His aldolase is still pending but his CK and LDH are perfect!!! I assume that these are the lab that we discussed getting 3 weeks after discontinuing methotrexate? How is Connor doing? How is the start of his school year going?

If everything is going well, we can continue without medications. We should check his blood tests in 3 months or sooner if he has any symptoms of rash, weakness, etc. …... If Connor has ANY return of symptoms or you have any questions or concerns, you can reach the rheumatology nurses at xxx-xxx-xxx and they can get you in touch with Dr. Soep.

I am so excited for him!!!!! Have a great fall!

Michelle