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

Thursday, February 16, 2012

Just another week ....

The good news for Connor and us here at home is the answer we got from Walgreen's that they are not concerned at all at this point in keeping his Methrotrexate supply coming as he is on the Pills now and not the Injections anymore. It seems the Injections are in shorter supply then the Pills.
This is bittersweet for us as of course it takes a huge weight of my heart about Connor but I am still not at peace about this shortage as it would be pure selfishness to not think of the Families and Children that are in jeopardy.

Connor had to stay home yesterday from school as he started to run a low grade fever the night of the 14th. It was just 99.8'F and he was at 98.8'F in the morning but since we are trying to be conscious about Connor's exposure from others so are we about him being a danger to his class mates with compromised Immune Systems as in precious Elizabeth.
He does have a cough and stuffy nose right now and we know it was the right decision to have him lay low for this long weekend.
I did take Alexander to school and it was truly sad to watch how sad he was and actually cried a bit about not having Connor with him. They might not always sit next to each other or talk much to each other during school but they are never less safely blankets to each other. This lasted for the beginning off class and through music class but once snack break came and Blake started sitting with him and talking about football all was well again. Both Blake and Alexander had brought Footballs to school so you can guess what they played during recess :)

We are glad that there will be no Snowboarding tomorrow due to the Presidents Holiday Weekend so we can all stay home and relax and hopefully Connor gets over the bug that is bothering him.

I want to Thank again Walgreen's who has really been on top of Connor's Medications. It is still strange when I walk up to the counter and before I even reach it and start talking they look at me and say 'We get Connor's medications right to you'. The only medication they have a hard time filling completely has been the Cyclosporin and I get it in parts. This is fine with us as we are always covered and just have to come back in after a week or two to fill the rest of the order. I still have to smile that after us coming in about once a week after two years they still look shocked each time they tell me the price it is costing me. Today it was 'just' $300, but there have been plenty of times it was $600 and $800.

Wishing You all a wonderful long Presidents Weekend. In our House the boys voted as their favorite President, President Lincoln, because of how honest he was and how far he came from such humble roots :) A true American Story :)



Hugs,

R A C A

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