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

Sunday, September 16, 2012

Goodness ... more happy news ..... ;)

Could I be on a roll? well, probably not after just two postings but as of now we are in a good mental place here at home and the last two days have been mostly about laughter and having fun.

Yesterday, Alexander had to finish catching up with 2 more hours of school work and after that it was freedom that translated in outside playtime, nap time, movie time and even some Playstation time.

My favorite, beside the nap!!!, was our 1 1/2 hour Nerf Gun Spy Adventure. The boys and I went for a walk/run around our mountain and to get the newspaper (which by the way was missing, so I am guessing Ron was lucky to get it when he left at 6 am on Saturday morning for Caracas, Venezuela).
On the way back to the house the boys ran ahead so they could station themselves at the top of the driveway to ambush me. I decided to get off the driveway and back track around them through the Forest and made it in the house undetected to get my own Nerf Gun to approach them from behind. This whole thing started a hide and chase that lasted for a good 1 1/2 hours and involved a lot of laughter and exhaustion as we were running like crazy.

After this we decided we deserved some down time and we found a great channel, Science, that showed show after show 'How things work'. What a wonderful show. Very educational!!!

Alexander and I managed some great one on one time as well and we read a couple of books on ADHD for kids. It is amazing how much I am learning and how fun he has to read through them with me and get engaged in it, plus opens up to talk about how he has been feeling. This morning, while Connor is still sleeping in, we sat at the sofa for over an hour just cuddling and talking.
I also had to start a fire in the fire place as it is C O L D outside. I love Fall and I so hope this is not the start of Winter!!!

On a JM news front, Connor has been in VERY good spirits most of this week and this weekend. I am wondering if the tapering of the Prednisolone form 4 ml to 3 ml could have this big an impact on his moods???

Well, I am leaving this short as my youngest just showed up with breakfast for me to have here in the School Room. He made me a bowl of Lucky Charms, so how can I resist that one?

Have a fun Sunday! and Thanks for checking in and don't forget to Vote and Share!!!!!










Hugs,

R A C A

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