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

Friday, November 19, 2010

Staying Home .... :)











The boys and I dreamed about today, a day for us to stay at home and not even leaving the house to pick up the newspaper at the end of our driveway :)

Well, as dreams go you might get part of them right but not all ....

It started okay with Connor and I getting up around 8 AM and right away jumping into our school session for the day. Alexander on the other hand was deep asleep so we closed the door and let him rest.
Interestingly I found that if I go straight to the school room with Connor and Alexander we are making great progress. Once we finish about 1/2 of the work load we then take time off for breakfast and this way it might happen that by 11:30 AM we are done for the day and the boys get to go off and play.

Well, the first change in plan's came when Alexander woke up feeling all yucky and sick. He ran a low grade fever and complained about a sore throat. The only thing he wanted was some cold Sparkling Water and to lay back down. So Connor and I finished up school and then I actually moved on to finishing up our Christmas Cards. Since we will enter another super busy time starting on the 23rd I want to have some breather down the road and be ready to mail all our Cards and boxes out as soon as Thanksgiving is over :)
After finishing up the Cards I watched the boys looking through their LEGO's trying to find the right pieces when this really crazy thought struck me that we should go ahead and organize them again. I remember that I was saying the same thing last year and then promising myself that I should never attempt this again BUT of course the memory of it must have faded quiet a bit because I truly did not expect it to be this exhausting again ...
There was no turning back however after we dumped out all the LEGO's we own. My precious oldest son started organizing them by color and I wish I would have stuck by this as well but of course that would not work for me ... I like to separate them all by size and shapes. I am telling you the biggest problem about this is that 35 years ago when I started playing with LEGO's there were not that many different sizes ... It is now almost bedtime for the boys and that means about 9 hours later and we still have a small pile left to work through... So, should this thought occur to you please remember my posting and call me first before you dump out every box you own :)

To actually also post some JDM related news, we are faced with some problems in regards to Connor's Methrotrexate Shots. Today was our 'Shot Day' again and Connor was getting very anxious this morning. For the last three weeks he has been complaining that they hurt and the explanation we have is that the fat on his tummy has gone down due to us cutting back on some of the Steroids and he is actually thinning down. Now he is happy about this part but he is not happy to loose the cushion he had for his shots. So far the stomach is still the best option because his arms and legs are even skinnier. Who would have thought that loosing a side effect that he did not like would be a problem for administering a medication?

Wishing all of you a pleasant weekend. We are looking forward to tomorrow night when Ron will come home, even if it will be for just one day. His schedule is very busy until the end of the month due to him having to move his whole schedule to be off for our trip to D.C. Once again my husband made sure we were taken care off! Thank You!!!

Hugs,

R A C A

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