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, July 2, 2010

A Day of Rest and some Recovery

The day after IVIG ... we never know how it will play out since some days the 'day after' is just like any other day and then there are days after Connor gets his Solumedrol, Methrotrexate and IVIG Infusion were he is just not feeling 100%. Last night he started complaining about not feeling well and this morning he was very depressed and feeling sad. Ron left early this morning for a trip and that did not help Connor's disposition since he gets so much more emotional after his infusions.
I woke up with a bad headache and was worried it would work itself into a Migraine but luckily it didn't because to shake Connor out of his Depression I asked him what he would like to do and the boys settled on going to the Farmers Market. I figured it might be good to get into the fresh air but have to admit a trip to the sofa and a nap sounded much more tempting for me :)

However, we did go to the Market and it was wonderful. We picked up some Nectarcots (a blend of Nectarines and Apricots that taste very yummy :) We also bought some yummy Tomatoes and Fresh Strawberries. Those lasted for about 2 hours after we got home since Connor and Alexander gobbled them up before I knew it. We also ended up with some Goat Cheese and I am still surprised about this buy .... no one in my family has liked Goat Cheese before but Connor was talked into sampling some at the Market and he talked me into buying it. I now just hope he will eat it or I will be asking some of you that live close to me if you like to have it - haha
The only little setback for us today was the fact that the Couple that had the Crepes Stand last year was not at the Market. We had counted on them for our breakfast but we were out of luck. We compromised and went to Grandmas Kitchen to have a Cinnamon Roll, Hot Chocolate and Coffee instead :)

After we got home we baked some fresh Chocolate Chips Cookies and then went to visit the Morgan's and their son Randy who is here for a visit. As always it was heavenly to sit and talk to Rev. Morgan but I felt bad for Mrs. Morgan who had her hands full watching over Connor and Alexander. I think next time I go for a visit I have to bring some Chocolate so when we leave their home they have something to snack on that will be calming :) I am sure it felt like a Whirlwind went through their House :)

Connor was doing quiet a bit better the more the day progressed but you could tell all day that he was not 100%. He was very short with Alexander at times, telling Alexander that he could not talk to him and just about trying to pick a fight every now and then. More then usual and I hope we can shake this by tomorrow.

As to my WorldCup News. You did after all have a couple days break from it so today's big news was the Netherlands beating Brazil 2:1!!! Ghana lost to Uruguay in the Penalty Shootout 3:4.
Tomorrow morning I am staying home to watch Germany against Argentina. So do not expect me to answer the phone or the door during that time :)

Have a Good Night!

R A C A

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