Our Journey thru JDM and Life!: Day 44 / 24 at TCH ... all about Medication

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 12, 2010

Day 44 / 24 at TCH ... all about Medication

Today was scheduled as an 'off' day for Connor when it came to getting a break from Therapy but I have to tell you it was not an easy day for him at all.

The day started at 6:45 AM with him waking up and being in a decent mood he got ready for his Breakfast meeting at 7:30 AM. This went well and it was also nice for Ron and I who got to have a quiet breakfast at the cafeteria for just the two of us.

We came back up stairs when the whole medicine schedule started happening. First we had to get Connor from his Breakfast Club so he could be hooked up to the Solumedrol that ran for 1 hour and 10 min. He then got his Benadryl and 1/2 hour later got started on the IVIG. This was an 8 hour trip and because it was his first IVIG infusion he pretty much had to stay in bed all day because of the possibility of an allergic reaction. So and when he was finally done with this he still had the Methrotrexate (Chemo) left. His biggest obstacle today was facing his day off and then not being able to go anywhere in his wheel chair. I am sure you can all sympathize that one day in bed might be heavenly but not when it is day 44 in the hospital.

I have to say it was really precious and wonderful to be able to have the three of us, Ron, Connor & I together for one evening, night, morning and lunch but it just feels so incomplete without Alexander in the mix. I was so excited to come home and just hug him to pieces. I have to say it warms but also breaks my heart a bit that when I came home he would not leave my side even now as I am typing this he is leaning into me ....

The good news for Connor is that he has made big improvements in his speech therapy that he won't have it on the weekend anymore and also just once a day instead of twice a day from Monday to Friday. He is still on for OT and PT throughout the weekend however.

So and then I saved the best for last :) We did get the green light for a 4 hour pass for Connor to take him out of the hospital on Monday. It is from 3 PM to 7 PM and will be classified as Therapy to see how he will do back in an environment outside a hospital. This of course is the perfect Birthday Present for me and we can't wait to all go out to a 'good' Restaurant for an early dinner. My whole immediate family all on one table ... HEAVEN :)

So I am now looking forward to going to bed. My brain and body is tired and I have to admit I just found out about the time change this weekend and I am not a fan - ha ha

Hugs,

R A C A