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

Tuesday, March 6, 2012

Grant & Max

There is a part that has changed over two years ago that is hard to explain but I will give it a try.

When I read a blog or get an e-mail about a child that is sick and battling a Disease or illness that has no Cure or no explanation, something happens inside of me that will impact my whole day, week or months to come.

This morning I read my dear friend Kim's Blog about the new battles her son is facing, the pain he is in and what her days look like due to this. When I read this I feel a sadness and a kind of exhaustion come over me and when I read about days that are very challenging then I get a clear picture again and again of days when we were faced with them. Those feelings become a part of your inner being and your DNA. You read the sentences but you feel the exhaustion, the fear, the lack of rest coming through with every word.

I also got an e-mail from some wonderful friends from our past lives in Texas. They also have Twins about the same age as Connor and Alexander and their little boy Max is having unexplained Seizures. He has undergone several testings and no answers yet. He had another Seizure last Saturday and are now scheduled to see a Neurologist. Once again the fear of the unknown is so clear and I am not sure if I would truly feel this if it hadn't been for Connor.

So I am asking you to please keep Max and Grant (including their Parents) in your thoughts and prayers! The sooner we find Cures, Answers and Treatments that work, the sooner little selfish me will not be bothering you with postings like these. BUT until we do I will post and remind you all about the worries that are out there and the pain families go through.

So in a strange way I do treasure those feelings even thought they can be dark but I treasure them because they remind me I am alive to feel and I am able to bring awareness.


No rest for the wicked, right?

Hugs,

R A C A

1 comment:

  1. If there is no rest for the wicked, I must be really, really bad! LOL. Thank you Anke for keeping us in your thoughts and prayers, and raising awareness with others.

    I think back to the days before we met, and I was blissfully unaware too. Don't get me wrong, I still helped with blood drives or to raise money for an ill child with cancer, but it never really hits home until it happens to you or someone you love...now my days are filled with worry not only over my own, but yours and all the other kids that we have met as unwilling participants in this subculture. There is always the memory of Hope (lost the battle with brain cancer age 12), the struggles of Kate McCrae(brain tumor, age 7) Henry (Leukemia) and countless others Emma, Jenna, Kory, Emily & Zack (just to name a few that we have met on the JM or JIA support boards.) It makes it all so much more real....

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