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, February 17, 2012

Fever and Methrotrexate again ....

I just took Connor's Temperature after reading on FB that his friend Elizabeth has a 102.3'F temp and a sore throat, and as of now Connor is at 100.2'F.
I just gave him two Tylenol and we hope to keep it steady but of course we also worry about little Elizabeth whose Lungs are much weaker and much more compromised then Connors.
We know that Strep has been making the rounds in School so hoping we stay clear of this!

We had to pick up some more medication for Connor today as well (add $70 to yesterdays $300) and the Pharmacist that was working tonight told us that Walgreen's will be unable to get a hand on the Injection Methrotrexate until sometime in April!!! Can you imagine if Connor was not on the Pills? We would be looking at possibly six to eight weeks of no access to his Chemo Therapy unless we could find another Pharmacy that has the needed supply. Still makes my stomach nauseous ....

So here is my plea to you tonight. You might be able to make an impact and it will cost you NO money and might take less then 5 minutes of your time. Please call or e-mail your State Senator and tell them about your concern about the Drug shortage. PLEASE!

Here is another news report where a 9 year old boy asks his Mom if he will die if he can not receive his Methrotrexate Injections. Now look at your child or Grandchild, Cousin, Nephew or Niece and think what your answer would be...
Think of Connor and how would you feel if he lost his battle and would die due to a drug shortage?

http://www.wral.com/entertainment/holiday/story/10743231/

Hugs and wishing you a peaceful and relaxing weekend. I know we are laying low here.



R A C A

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