Our Journey thru JDM and Life!: Things are looking up :) Solumedrol & Methrotrexate

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, March 26, 2010

Things are looking up :) Solumedrol & Methrotrexate

How much difference four days make ... I have to tell everyone of you that today's Nurse visit for Connor went really well. I would be lying if I said I wasn't nervous but I had some wonderful support on my side today in the form of Miss Jennie, who on her day off found a Baby Sitter and then came all the way from C-Springs to sit with me and Connor through both of his Solumedrol and Methrotrexate infusions.

The whole process was calm and organized. I got to do the change of medications for Connor while his nurse and Jennie watched me do it and once the Methrotrexate was hooked up our nurse left and I got to flush Connor's port with Saline followed by Heparin and then take the needle out of his port all by myself. I have to say it felt pretty good to do this and I am pretty proud of myself :)

The goal now will be to get to the point where I can do all of it, including accessing the port and just leave the blood work for the labs.

The rest of the day was peaceful and happily uneventful :) It started snowing in the afternoon and it snowed well through the night. So the work I did the other day spending three hours on our 4-Wheeler plowing snow is not visible anymore but luckily Ron is back home and the Back Hoe should be working :)

So 'Thank You' Jennie for being such a comfort today and lending your experience but most importantly for some wonderful 'girl' time.

We also got a precious call from Connor's favorite PT at TCH, Miss Kerrie Carrie. She wanted to know how Connor was doing and also offered her advice on dealing with JDM for his new PT if she would want it.

Another phone call we got was from Connor's Speech Therapist, who is on Spring Break vacation right now but will come on Monday at 11:30 AM for her first assessment. She choose the lunch hour so she can also observe Connor eating ...

Hope You all had a good day as well!

Sending thoughts to your 'family' in TX and hoping that a contract on their house was signed today!

Hugs,

R A C A