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 9, 2012

Family, Friends & JDM Family Support :)

I have to say I am so happy to have found so much support from so many many of you through e-mails, Facebook Postings and Phone Calls.

I do not want to keep going back and bore you all about the events from February 1st but how can I not highlight the people that have shown so much love and support.

There was my husband who never questioned anything we said to him when we came home that afternoon but right away posted about his thoughts. Our friends from AK who were so pumped up about his they made me laugh all night.
There were the friends who posted on FB, on my wall and theirs about the news that were traveling so fast. There were the phone calls and txt messages that made us feel loved and one phone call especially stuck out came from my lovely sister Beate, who read the news on her Computer in Germany (I had not mentioned anything to my family at all). She called and said that she was laughing and telling my oldest sister Carmen how we truly all carry the same DNA. She pointed out that it has been somewhat a curse in our family that we can not keep quiet when we see injustice but she said that I will become calmer as I get older :) She asked if I told my Mom and I said 'No' as I did not see how this has any impact for them but maybe I will after all.
I think I will send the video from 'The Rachel Maddow Show' to my Mom so she can at least hear Connor's sweet little voice, even thought being laugh at by Mr. Santorum might be a bit upsetting but she won't understand what he is saying so all might be okay :)

http://video.msnbc.msn.com/the-rachel-maddow-show/46246300 


I cherish everyone that reached out. There was a huge relief to know I did the right think when so many from the JDM Community, but also Parents with sick children that does not include JM but instead other Autoimmune Issues or Cancer was involved.
I have not had a bad response at all from anyone that has a sick child but instead felt some very cold shoulders this week from around the community. Only once was I actually approached about it and I could voice some of my opinion but I only got a blank look back. I can tell you that I might sound selfish but I knew in a heartbeat that this person never had to worry about loosing a child.
I also found it interesting that in any of the local news there was NO mentioning about the incident at all. There were several news prints about Mr. Santorum's success here in Colorado and his 'great' speech in Woodland Park and Colorado Springs but no mentioning about the Question and Answer section. This should tell you that Connor and I do not get much support at all from the local front but from a selected few that matter more then they probably even realize!!! Pippi ... you are one of them :)


So I could go an mention you all by name but will refrain from it as I believe you all know who you are and also with me being so scatter brained lately I would probably miss someone and then feel bad.


It is truly not fun being the odd one out but I have the most wonderful company along for the ride. It was really great to see an actually Video Thanks to 'The Rachel Maddow Show' and it put a focus on how sad it was to ask a serious question and then be laughed at by a GOP Candidate but also hear him be cheered on by the crowd. It was a lonely feeling that was only made better when we walked out and an older gentleman patted me on my back. We also made it to uTube but I have not watched it yet. Thank You to Kim, Annie and Shirley for sending me the links!!!
Connor voice comes on after minute 6 and you can just hear me a bit after minute 10.


So I have always known this! and once again again you all proofed that my Family and Friends are the BEST!


Hugs,


R A C A

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