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, June 7, 2010

Aftermath of our IVIG # 4

Well, I posted my blog on Thursday the day of Connor’s infusion at TCH but posted it before the day was over.


We came home that afternoon and after I posted on FB that I am ready to sit back and have a glass of wine, my wonderful and precious friend Caroline came over bearing bread, cheese, Strawberries, Chocolate and the best of all the gift of an evening relaxing and having a fun Girl Time and Conversations :)

THANK YOU once again to my amazing friend for taking the time and for her husband to take over meal and bed times with their cute twin boys :)


Friday’s big event was Ron coming back from Paris and to the boys delight he was carrying gifts in the form of very tasty sweets and cookies. There is a lot I like about France and the Food and Pastry selections are high on my list. Ron will be home for 5 days this week and then he will start going on 4 day Caribbean trips and also one Anchorage trip so far.


Saturday I had a wonderful visit from a friend I made when I was still part of the Lake George MOPS group and it was a true treat for me to hear from her since she has just returned to Colorado after spending one year in Germany. Oh, and Anne if you are reading this I have to tell you, you have me craving Yogurt ever since we talked! :)


Saturday to Sunday Night was our little hick-up with Connor. He seemed to do really well after his latest IVIG Infusion on Thursday and so it came to a big surprise for us when last night at 2:20 AM the wireless doorbell we had installed in our room with a push button next to his bed was going of. We installed this chime at first when Connor was released from the hospital and after we felt comfortable enough to move him back in his own bedroom. Not once has he used it and we told me he should only push the button if something was wrong and he needed us there asap. So we both, Ron and I, got up and went to his bedroom where he was sitting in his bed complaining about pain in his knee. I went and got him some tylenol and Ron laid down with him for about 30 m in until he was back asleep. About 1 hour after this we heard Alexander calling ‘Mama, Papa’ through the house so up we got again only to be told he could not sleep and was worried about bugs. So here Ron went again and laid down with Alexander for about 30 min until he was back asleep .... Can you tell that my husband has more patience at night time? I personally need my sleep and don’t do well when it is interrupted and if that goes well then I have quiet a bit of patience during daylight hours - ha ha.


As of today everything was heavenly. Colorado weather was at it’s best. We got up in the morning to beautiful blue skies and warm enough temperatures that we were able to have our Belgian Waffle Breakfast on the Back Deck. The boys got to feed Chipmunks afterwards while I got to finish my Book ‘Sarah’s Key’ which was heartbreaking to read but also one of those books that will stay with you for a long time.

For lunch we all went on the 4-Wheeler to have a picnic in the National Forest next door and then had some fun getting wet in the sprinklers Ron had set up for the boys. So all in all a peaceful, fun and relaxing Sunday ... just what we needed :)


Hoping your weekend went as well as ours and now we are gearing up for a busy but fun week a head of us.


Hugs,


R A C A

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