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

Saturday, June 12, 2010

A taste of summer ...





I can’t believe it is already Saturday! This week has been busy and is going past us at a very fast pace. On Tuesday the highly anticipated arrival of the Tossell Family took part and they surprised us with one of the fasted travel times one can have from DFW, TX to Lake George, CO in a car traveling with 6 year old twin boys. Connor and Alexander woke up that morning asking about every hour when they would arrive and I was glad for Heidi to txt us continuously about the progress they were making :)

David, Heidi’s husband, had to leave again the next day for work so he took a flight back and Ron left on Thursday morning to go on a 4 day trip. This means our house right now is occupied by two Mom’s and four six year old boy’s :)

So the last four days we have been staying fairly busy with play-time’s and the usually challenges family life can bring :) Two days ago I am sad to admit was not the best day for the boys and I and we were on confrontation mode about all day long. What was sad was not the fact that both boys knew how to push my button in the fact of talking back and not listening to just about anything I said BUT the way I had just about no patience for it all ... so I was glad that day was over in the end and yesterday plus today was so much more peaceful and pleasant all around.

On Connor’s JDM up-date the big event this week was his first experience with getting a Methrotrexate Injection instead of an infusion and also the fact that we skipped his Solumedrol Infusion this week :) We are so excited about cutting back on the Steroids and I wish I could tell you now that the injection went well but I have to admit that he ‘hated’ it with every fiber of his body and mind. I went and numbed the injection site with Lidocane about 1 hour prior and our Nurse had no problem ‘poking’ him BUT when she pushed in the Methrotrexate he screamed and cried for the whole duration of about 15 seconds and about 30 minutes after. Needless to say I am not looking forward to the next one two weeks from now. Lucky for Connor he will have it in the form of an infusion again next week :) There is one other change that has occurred this week on a continuing basis and that is Connor’s complain about pain in his knee’s. Not sure why all of a sudden this is an issue but after talking to Dr. Soep we will just keep an eye on it.

Today was our last day with the Tossell Family and it will be sad to see them leave Colorado. Why all pour friends are so hesitant to move to beautiful Colorado is unimaginable to me. Who would not prefer temperatures in the 40’s and 50’s in June to the 90’s and 100’s that Texas has????? :)

Also, today, the boys were invited to a Birthday Party at the Zoo and they loved every minute of it. The temperature all day was in the 50’s and I think it was the best weather for the animals at the Zoo. They were all out and very alert and other then Connor and Alexander loving the time they got to spend with their little friends they were all over heels that they were allowed to touch a snake.


I am also very glad to say that our friends in Chicago got some good news yesterday and we are so happy for them and also selfishly I was needing some good news and it made my day in every way.


Hugs,


R A C A

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