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)-

Hope

Hope

Monday, August 20, 2012

Still on the Roller Coaster ....

I am sad to say that today was not a good day for Connor health wise ...

We started out well this morning but we knew something was brewing as it took him more effort to walk the stairs and his legs looked very stiff again.
First on the schedule was school and Connor was very focused and did a wonderful job at getting his assignments done, which was more of a challenge for our all over the place youngest ;)
After school and before lunch I told both they could go outside to play (they call it recess - and I call it a time to get the wiggles out of them), mostly for Alexanders benefit :)
Alexander did not wait and was outside, playing Volleyball on the Trampoline, within 10 seconds, which is a new sport he created and is very good at :) 
Connor surprised me in saying he was going to stay inside and help me. I always know he is feeling badly when he starts wanting to be clued to my side.
After about a half an hour he said he wanted to go outside and ride his bike. He got his helmet and went out but came in shortly after crying that he could not ride his bike due to his legs being in to much pain to pedal.
He had a good lunch (appetite is way up due to those lovely higher dose of Steroids ...), and he took it easy all afternoon until it was time for us to leave at 4 pm for the Open House at School.
We wanted to go to see some of our friends and also get all the school supplies into their shelves, but I now wish we had stayed home and just caught up with everyone tomorrow. We arrived at school and it was indeed lovely to see so many of our beloved faces but Connor went downhill fast. He played for a bit and then I suddenly found him in a corner with his head down and looking close to crying. I asked what was wrong and he said his muscles are hurting to much.
We left with me carrying him to the car. Tomorrow I will bring his wheel cahir to school just in case because carrying him is quiet a bit harder then when he was 5 years old and first got sick.
Right now he is laying on the sofa and his body is cramping up again :'( I gave him his Naproxen, 7.2 ml, two Tylenol and his Trazadone and I am hoping it will help to get him to sleep. He is watching a Documentary about China right now which keeps him distracted for now.
Tomorrow is his Methrotrexate Day and my hope is that by giving him his Shot in the am he will start feeling better throughout the day.
I did e-mail our Dream Team already but also made an appointment with the boys Pediatrician for Thursday morning at 8 am.
Connor will also have his PT evaluation done on Wednesday at 1 pm and it will be interesting what rating he gets.

Now there was a highlight today for Connor that got a huge smile out of him and that was a Card from his beloved Miss Nancy and Mr. Ed. Oh how our adopted Families know how to spoil our dumplings! THANK YOU Nancy and Ed because the timing today of that Card was perfection!!!

I am sure I am forgetting something but this was about the core of what happened today.

Thank You as always for checking in and as always I will keep the updates coming :)



Hugs,

R A C A

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