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

Tuesday, January 4, 2011

Ciao 2010 and Bonjour 2011


I am not sure how to read our ending of 2010 or the beginning of 2011. I did say that for 2011 I am going to take each day as it comes but for some wicked reason I am attracting chaos and destruction about everywhere I go almost each and every day.

So here is a little lineup to the last few days. On the 31st of December 2010 Ron found that our Ford Excursion Diesel did not want to start when he arrived at COS at 8 PM, thanks probably to the COLD weather and the Diesel fuel gelling. I on the other hand broke the Snow Plow on our 4 Wheeler earlier that morning (thankfully I was almost done with plowing the 5 inches of fresh snow we had). In my rush to load up the boys at 8 PM to pick up Ron I forgot to close the Garage Door. Now we had temperatures in the 10's and 20's (Fahrenheit) and on top of that our Water Lines and Water Heater are in the Garage.
So can you guess that when we came home 2 1/2 hours later we were out of Water because our Pipes were frozen. To make it all the more memorable, one Pipe then decided to burst at 11:30 PM. So we had a flooded Garage and still no Water in the house. To say that we all went to bed in not a good mood is the least. However on a bright side this was the first New Years Eve that the boys were able to last until Mid Night and watch the Ball drop, on the down side to this we found out that the boys are in a miserable mood when not getting enough sleep... we had some grouchy kids all day on the 1st!

So on New Years Day we found a Plumber who would come out and fix the problem and by 11 AM and almost $300.00 later we had Water again and a fairly clean Garage Floor thanks to the water leak ....

Let's jump to January 3, 2011. Connor's Casts were exchanged for new ones with more of an angle for his feet. He picked the colors of 'Glow in the Dark' and 'Yellow'. I should probably mention that I almost took the Garage Door with me when we left for the Hospital since I for some reason decided to back up, the one car we have left that is running, while the Garage Door was still closed. Thankfully my husband was watching and loudly yelled at me to stop before I hit it.

Last night was a nighmare again for Connor who was in excruciating pain. His left leg/foot is in a worse condition then the right so they made more of a correction in that one and as with the first casts we hope the pain will subside in a day or two.
So and today was injection day again for Connor's Methrotrexate and this time we went for his bum and we had not any more success as when we tried his leg last week. Can I possible miss him being heavy on Steroid Weight around his tummy? I do miss the excess weight about every week for 5 minutes while I have to inject him and he is unhappy with me because I cause him pain. Today he was actually dramatic enough to yell at me that I am hitting a bone. Well, I can tell you I was far away from a bone since he does have cushion back there but he sure makes it interesting for me when he makes statements like this :-o

Now, I just hope our travels to Chicago will go smooth tomorrow. We are due for another Check-Up with Dr. Curran/Dr. Pachman on the 6th of January and we will be spending 2 nights in beautiful Chicago with a Hotel Room and an SUV Rental, thanks to AA Frequent Flyer Miles. Gosh how adventures we could be if I did not have the handicap of Connor's feet. As it is the boys and I will be traveling with a Wheel Chair once again ...

Hope your New Years end and beginning was a bit more quiet!

Hugs,

R A C A

1 comment:

  1. Oh my! What a week! : ( I don't know if it will help or not- you've likely heard this before. We use Emla (Lidocaine) cream before a shot, and we usually use the fatty part of the arm for Methotrexate. We also use a very small gauge needle. My girl never complains, but she also sees how much it helps her. She would rather have her MTX injection than stickers any day. I certainly hope that the rest of the year goes MUCH BETTER for you than the start! Take care! :)

    ReplyDelete