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, May 17, 2014

Happy JDM news for Connor and us! ❤️

On April 12 Connor had his blood taken for a checkup and just two days later I got a wonderful email from Michelle that said that his blood levels were GREAT!
This truly is always very happy news for us but what came in the next email made us some of the happiest people in tne world.
Connor gets to tapper down his Methrotrexate! The last and final toxic drug he is taking for his JDM. If he stays steady and shows no muscle weakness or pain then the next nine weeks will determine if he is on his way in remission... This is HUGE! 
I am thrilled on so many levels including me not having to inject him anymore if the tapper is successful.
Below is the tapper schedule Michelle send me so keep is in your thoughts and fingers crossed it will go smoothly.

Let’s taper as follows:

 

--Decrease methotrexate to 0.6ml weekly for three weeks

--Decrease methotrexate to 0.4ml weekly for three weeks

--Repeat blood tests

--Decrease methotrexate to 0.2ml weekly for three weeks

--Discontinue methotrexate!!!!!!!!!!!!!!!!!!!!!!!

--Follow-up in 3 weeks and get labs at that time


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5 comments:

  1. AnonymousMay 17, 2014 at 6:51 PM

    Yay! That is wonderful news! I will be sending good thoughts and hoping all goes well with the taper. -Jean

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  2. My3LittleE'sMay 17, 2014 at 7:24 PM

    I am so happy for you both!! I know my dad was on Methotrexate for his Rheumatoid Arthritis. These meds are just the lesser of 2 evils. This less of this stuff his young body has to deal with the better. Prayers for this to go well and a nice long remission for him. :)

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  3. SusanMay 17, 2014 at 7:54 PM

    Oh Anke, that is wonderful news!! I pray this goes well and Connor is on his way to remission. This has been a long journey for him and you both deserve a break.

    Love and hugs,
    Susan and Dominic

    ReplyDelete
  4. KLPMillerMay 18, 2014 at 5:53 AM

    This is HUGE!!! Our fingers are crossed :)

    ReplyDelete
  5. UnknownMay 24, 2014 at 9:27 AM

    Wonderful news!! Go, Connor, go!

    ReplyDelete

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