Our Journey thru JDM and Life!: Day 40 / 20 TCH

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, March 8, 2010

Day 40 / 20 TCH

Back at TCH, my home away from home. It is truly not to much fun coming back to the hospital but since it means being with our wonderful and precious oldest son then it is worth every minute of it.

Today was a nice trade off with Ron as we were able to have some quiet time talking while Connor had PT and Speech. Connor was not doing to well overall today and it might be due to him being tired or he might just be exhausted. He really does not have a day 'off' since he has started Therapies and maybe it is taking a toll.

We also discussed our concern about the new drug cyclosporine and it's possible side effects with Dr. Soep. She told us she will talk to the Nephrologist about the doses and how it might affect Connor's one kidney. If there is a concern then we might have to switch to another second line medicine.

Today Connor got his wish and Thanks to Oma I brought a big pot of Tomato Soup with Butter Dumplings plus he spend a lot of time trying to play with his new Lego he got from his sister and from Oma & Opa. He tries to put the pieces together but does not quiet have the strength to push them all the way together. This is okay with me since you might know that playing with Lego is something I love to do :) Later this afternoon Connor was asking me to please be allowed to watch Pirates of the Caribbean 2. Since it is hard to say 'no' to either one of our son's lately is was an easy choice. What I did not expect was the request to watch the movie in the dark so it would be scarier .. only our little dumplings at age 5 would ask for this. They are so fearless and it is hard to believe they left ELMO behind them at age 3 ...

Alexander has been feeling better when I left and I have to say it was two wonderful days at home with him. He has been eating better and has been great at playing with his Lego's, plus him, Oma, Opa and I got to play some board games as well.

I for once got to work out again and even played a few games of wii tennis and entered a boxing match. I guess I must have gotten rid of some frustration because not only did I knock down my opponent twice in the first round I knocked him out completely 10 sec into the second round. Now one day later my arms are sore - ha ha

So my wish tonight is for my family at home in Lake George to be able get some rest and for Connor to get a good night sleep so he will be well rested for tomorrows activities. For his Breakfast Club in the morning he ordered Cheese Pizza .. I sure hope he realizes this will only be served while he is in the hospital. Which by the way we were told today might last for 14 more days ....

Hugs,

R A C A