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, April 16, 2010

Day 29 at Home ... For my Mom :)

Friday, the day after the infusions!

Not sure if this is the same experience for all our JDM friends but for Connor the day after the Solumedrol and Methrotrexate Infusions are really hard. He woke up all moody and achy feeling and when I took his temperature is was a low grade of 99.8 F. We found out that those days that are best spend on the sofa watching TV ....

Today I want first of all Honor my Mom in my blog and it is ironic I am doing this in English since she won't understand what I am writing. I have been very blessed as a child to be born to Parents who in every sense of the word were made to be parents. There was unconditional love and most of all patience without boundary! Raising five children is never an easy task and maybe the most challenging one of them all was myself, the baby :)
Today my Mom and I got a day 'off' and we left right after breakfast for some shopping in Colorado Springs followed by lunch. I truly love spending time with my Mom and she will always put me in awe at how selfless she is when it comes to helping others, how she never says a bad word about anyone and has always been happy with her life. She resembles the true meaning to the saying 'Beautiful inside and out'. When I was a small child there was a black and white picture of my Mom taken on a boat trip she took with my Dad and Family. How I loved looking at that picture and I kept telling her over and over that she was the most beautiful woman ever and she always laughed and said that this was due to her being the only 'young' woman in the picture. Trust me when I tell you this is not true but it once again showed me that my Mom never counted on her looks as something that mattered a lot and she was never vain .... So the true beauty is and always has been her heart.
So to put this all in one sentence .... the two of us had a wonderful, fun and relaxing day today and when we came back we were very happy and grateful to see all four of our men again :) So THANK YOU to my wonderful husband and for my precious Dad for giving this day to us!

I am looking forward to our weekend and also to next week which will be an adventure again. For one, Connor and I are heading to Chicago for his check-up at CMH and also for a Mini vacation with the beautiful Miller Family. Can't wait to catch up with my little sister :)
And for another, next week will be Alexanders first meeting with a Psychiatrist, who I am guessing has a good feel for kids because the first meeting and appointment will be held at McDonald's. Talk about taking the pressure off!
I am so so hopeful that this will be leading us into the right direction because it almost hurts to watch Alexander at this point. He is constantly moving and even when he tries very hard he can not seem to slow down. I took a nap with him the other day and his legs wiggled non-stop. I asked him to lay still and he started crying and telling me he can't. Another symptom he has is his constant talking. He always loved to talk a lot but now he just can't stop. When he is not talking he us humming....... .
We figure when this whole thing is over our whole family will be in therapy but for now you all are mine because I use this blog as a sounding board - ha ha

All the Best!

Love,

R A C A


1 comment:

  1. Hi, wanted to post on the wiggling and humming. My Connor went through a stage of this that started in first grade, got worst in second and third and has calmed some. Much of it is stress related and I am told the other is the fact that their bodies are now cooped up so much when it wants to run.

    Recommendation were to find activities that forced quiet and patience and took a lot of Brain energy to focus--we did chess then guitar and it really, really helped him to focus and settle. We also did gymnastics as it is physical but really takes a lot of mental focus to hold the positions and such. (Some people use karate/tae kwon do but Connor hated the idea of hitting people or being hit)

    I think the psych is good too.

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